A guide to staying out of hospital when you have dementia

An Unforgettable Guide to‌

Staying out of hospital when you have dementia

We’ve don e the researc h for you.

What you need to know about avoiding a hospital admission (and staying in the best of health) Common causes of hospital admissions How to spot them, how to prevent them, how to manage them

Contents Introduction

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Chapter 1: Urinary Tract Infection (UTI)

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Chapter 2: Delirium

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Chapter 3: Pneumonia

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Chapter 4: Distressed behaviours

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Chapter 5: Falls

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Chapter 6: Malnutrition/ Dehydration

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Chapter 7: Support in the community for people living with dementia

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Chapter 8: Support in the community for you

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Conclusion

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Unforgettable.org 2017 All content and images are copyright of Unforgettable.org Content written by Danielle Wilde and edited by Kate Corr

Welcome from James Mum was one of the lucky ones. During her dementia journey she was only admitted to hospital once, but I know many others aren’t quite so fortunate.

Being away from home can be very confusing for a person with dementia.

It’s very upsetting for their family, too. So is there a way to avoid it? When I posed this question to Danielle Wilde, Dementia Lead at the Royal Free Hospital London NHS Foundation Trust, her answer was both comforting and heartening. There’s lots you can do to prevent some of the most common causes of hospital admissions, she told me.

I’m delighted to say that Danielle has agreed to share her deep and impressive knowledge and experience with Unforgettable, resulting in the compilation of this eBook. We hope that it helps you feel better equipped to keep the person that you love safe, healthy and away from the hospital for as long as possible. I wish I had access to this when I was caring for my mum.

Thank you from the bottom of my heart to Danielle for making this eBook possible and for her generosity of spirt and dedication to those affected by dementia – Danielle you are inspiring.

James Ashwell, Founder, Unforgettable About the Author Danielle is an Occupational Therapist with 10 years’ experience working in dementia care and neurology. In 2013, she led a Health Foundation project targeting length of stay and avoidable admissions for patients with dementia in hospital. The project achieved excellent outcomes, has been reported in national and international journals and conferences, and has been cited as an example of best practice by NHS England and Healthwatch. Based on the outcomes of the project, Danielle developed a methodology for acute hospital dementia care, “CAPER”, which was shortlisted for two national awards in 2015. As Dementia Lead, Danielle has strategic, operational, clinical and educational responsibilities for one of the country’s largest foundation Trusts, Royal Free London, employing over 10,000 staff members.

We would also like to thank the following people for generously taking time out to review this book for us: Jose Bennell, clinical nurse specialist in nutrition at the Royal Free Hospital; Khai Lee Cheah, Consultant Geriatrician at the Royal Free Hospital; Dr Julia White, GP and QOF Dementia Lead at Nottingham; and Dr Harriet Tucker, Emergency Medicine Doctor at Kingston Hospital NHS Trust.

Introduction No one wants to be admitted to hospital. But if you have dementia, a hospital stay isn’t only distressing, it can also lead to a rapid decline in overall health and wellbeing.

Recent research commissioned by Unforgettable* reveals a distinct deterioration in the physical and mental health of a person with dementia both during and after a hospital admission. If you’re currently caring for a loved one, we doubt this comes as much of a surprise. After all, an unfamiliar hospital environment is likely to cause acute anxiety, and could lead to depression and withdrawal. Then there are physical discomforts; painful hospital procedures, new drug treatments with potential side effects, the risks of infections, bedsores and falls. There’s a lot of great work happening in hospitals to help people with dementia and their carers. However, the NHS is facing the toughest challenges it’s ever had, and staff are under an enormous amount of pressure. Even if you have a brilliant local hospital, most people agree that preventing a hospital admission is better than needing one.

So is there anything you can do to prevent your loved one needing to go into hospital?

The good news is that yes, there often is. Our research reveals that many of the reasons people with dementia are admitted to hospital are surprisingly similar; pneumonia, urinary tract infections, aggression, falls and malnutrition are most prevalent and could often be avoided by fairly simple changes in lifestyle. For example, if they’re already eating healthily and drinking frequently, they’re less likely to suffer from a UTI or malnutrition.

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If you’ve already improved safety in their home, they’re less likely to fall or have an accident, and if they feel understood, they’re less likely to become aggressive. In fact, none of these conditions generally need complex, medical intervention or invasive surgery. Instead, simply knowing what to look out for, and then taking a few preventative measures, could make a great deal of difference. Remember, forewarned is forearmed.

Unforgettable has compiled this eBook so that you have all the information you need at your fingertips. Chapter by chapter we reveal the most likely reasons why your loved one might be admitted to hospital, and explain how you might prevent it happening. Prevention often simply means being able to identify the problem earlier so that it can be managed at home. A urinary tract infection, for example, can often be treated with a course of antibiotics if it’s spotted soon enough – so can pneumonia if you know the symptoms and contact your GP quickly.

Most importantly, we hope this guide will help you keep your loved one safe and healthy and at home, so that your dementia journey can be that little bit easier to cope with. *Research was carried out by Jiawen Sharon Liu from the Social Innovation Partnership

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Chapter 1: Urinary Tract Infection (UTI) UTIs are common and affect people of any age. Women, the elderly and those with dementia may find themselves at an increased risk of developing a UTI. Although UTIs can often be treated at home, they remain a leading cause of avoidable hospital admissions, especially in people with dementia.

This guide aims to help you understand, spot, prevent and treat symptoms of a UTI in a person that you care for.

What is a UTI? (Also known as, urine infection, water infection, cystitis, kidney infection) A UTI is an infection of the urinary tract, a system that consists of the kidneys, the bladder and the tubes that connect them (ureter and urethra).

UTIs occur when the urinary tract becomes infected, usually by bacteria, which in most cases enters the urinary tract from the gut via the urethra.

What causes a UTI? Although UTIs commonly occur when bacteria enters the urethra, it’s often not clear exactly what caused the UTI. What we do know is that certain conditions or circumstances increase the risk of acquiring a UTI. They are: • Conditions that obstruct the urinary tract such as kidney stones • A weakened immune system • Presence of a urinary catheter • Structural or anatomical changes to the urinary tract, for example an enlarged prostate in men or a prolapse in women • Poor hygiene and/or incontinence • Diabetes • History of previous UTIs • Urinary retention or a reduced ability to empty the bladder fully

How can I prevent a UTI? It may not be possible to prevent UTIs from happening, particularly if the person concerned has already had one in the past. However, there are things that can be done which may reduce the risk.

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Personal hygiene • Using non-perfumed soap or shower gel • Wiping front to back after using the toilet • In an incontinent person, cleaning genitals with a wet wipe after each episode of incontinence

Manage continence • In-dwelling catheters carry a significantly higher risk of UTI, no matter how well they are cared for. Speak to a continence nurse via the GP about only using urinary catheterisation as a last resort.

• A person may lose the ability to remember that they need the toilet as their dementia progresses. Try prompting them every couple of hours or walking with them to the bathroom.

• Incontinence pads should be checked regularly and replaced if wet or dirty.

Make toileting easy • Make sure that the person can find the toilet using appropriate lighting (especially overnight) and signs if required.

• If they need any equipment to help them walk (a walking frame or slippers for example), make sure that they are in reach and accessible to them at all times.

• If the toilet is far away, for example up a flight of stairs, consider getting a commode for when their energy levels are low.

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• Ask your GP for an Occupational Therapy assessment if you notice any difficulties getting on or off the toilet; there is equipment that can help.

• Ensure the person is wearing loose fitting, comfortable clothing and cotton briefs. You may want to simplify garment choices if there are lots of fiddly buttons, belts or tights.

Manage eating and drinking • Constipation and dehydration are significant contributing factors to developing a UTI. • Make sure the person eats a high-fibre diet and regularly opens their bowels.

• For people who don’t like drinking water, consider getting them their favourite juice or hot drink.

GP Top Tip: “I find that constipation is a huge cause of UTIs. As a GP, it is definitely one of the things I look out for and treat alongside any UTI.” Dr Julia White

How to spot a UTI? If the person you care for has had a UTI in the past or has one currently, try to take note of as many signs and symptoms as you can and write them down. Having a UTI once makes it more likely that they will get another one, so knowing what to look out for will make future detection much easier.

Common symptoms of a UTI include the following; • Pain or burning sensation when passing urine • Urinary urgency • The feeling that you haven’t quite emptied your bladder • Urine that is foul-smelling, bloody or cloudy and dark in appearance • Incontinence • Lower abdominal pain • Fever • Shivers/chills • Nausea/sickness • Feeling generally unwell, achy or tired • Confusion • A feeling of agitation or restlessness

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Changes in behaviour Any sudden change in behaviour is worth a closer inspection. You may notice changes in a person’s temperament or emotional state that seem out of character for them.  It is not uncommon to see a person who is usually very amiable and relaxed become angry and irritable or somebody usually calm to become tearful and distressed. You may see a person walking a lot more than usual or pacing; this could be an indication of urinary urgency.

In a person with dementia, you may need to look out for more subtle symptoms of a UTI. If you know what to look for, you may notice changes in their behaviour or temperament that may suggest that something is not quite right. It is important to try and spot these signs and make a record of them so you can be vigilant in the future. For example,

Increased confusion A person may appear more mixed up than usual or they may suddenly forget things that they are usually very familiar with, for example your name or where they are. They may experience increased difficulties with concentration and attention span and this in turn may impact how they are able to function. You may find that the person suddenly struggles to dress themselves or they forget where the bathroom is. Additionally, a person may become more confused in their speech, for example they might get their words mixed up or they might say something to you that makes no sense.

Increased agitation Sometimes pain and discomfort or a feeling of general malaise can cause an increased level of agitation in a person with dementia. They may appear to be more restless or fidgety and you might notice that they have trouble sitting still. They may appear anxious or worried about something.

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Changes in behaviour Any sudden change in behaviour is worth a closer inspection. You may notice changes in a person’s temperament or emotional state that seem out of character for them. It is not uncommon to see a person who is usually very amiable and relaxed become angry and irritable or somebody usually calm to become tearful and distressed. You may see a person walking a lot more than usual or pacing; this could be an indication of urinary urgency.

Changes in routine Changes in routine can indicate that a person is not feeling like their usual self. Losing either interest or ability in tasks they usually are able to perform can be a sign that something is wrong. Losing interest in food or having much more or much less energy than usual could be a sign that something is wrong. A person may lose interest in their usual activities or they may find participating in them more difficult.

Changes in mobility Having an acute infection could increase the risk of falling. A person with an underlying infection may appear unsteady on their feet and the urge to pass urine might cause them to rush. Conversely, an infection might cause a person to be unable or reluctant to mobilise by affecting their motivation, balance and strength.

Delirium In a person with dementia, any acute infection, most commonly a UTI or pneumonia, can cause a condition known as “delirium”. A delirium is an “acute confusional state” which can be very frightening both for the person and those around them. In people living with dementia, delirium can sometimes be missed or mistaken for a sudden worsening of dementia symptoms. It can also resemble psychosis (with delusional thoughts and hallucinatory features) or depression (withdrawal, fatigue and loss of interest in life). It’s really important to look out for delirium because the condition is treatable and can improve if addressed quickly.

For more information or advice about delirium please see here (link to chapter 2).

CASE STUDY Maria is usually able to get herself to the toilet without help, but after returning from the supermarket one day, her daughter Pat notices that she’s wet herself without realising. When Pat tries to talk to her about it, Maria gets her words jumbled up and can’t answer properly. She also seems more fidgety and restless than usual.

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Maria has had a urine infection in the past and so Pat wonders whether her mum has got another urine infection (she had one before and became so confused that she fell and broke her hip). She manages to get Maria to wee in the commode and takes a sample of the urine up to the GP. The GP tests it and finds that Maria does have an infection. She prescribes antibiotics, and after a day or two Maria seems back to normal.

What to do if I suspect a UTI? Call the GP Notify the person’s GP of any signs or symptoms you have noticed. The GP may want to assess the person and they may require a urine sample. The sooner you suspect something is wrong and involve the GP, the sooner any infection can be identified and treated. Sometimes the severity of the infection will warrant an admission to hospital, especially if the person also has a delirium. In hospital, they may be prescribed intravenously (via a drip) antibiotics and fluids. The GP will assess whether or not the UTI can be safely managed at home.

Urine sample Sometimes the GP will want to test a sample of the person’s urine. Although they may attempt to get the sample themselves, often it falls to the carer to try to collect this. If the person with the suspected UTI is continent, you may be able to get a cardboard pan for the toilet from your GP or district nurses. This allows the person to use the toilet as usual and you then collect a sample from the cardboard pan. If the person has a commode at home, encourage them to use this to pass water into and you can then collect your sample from there.

Antibiotics If the GP confirms that the person you care for has a UTI, they will prescribe a course of antibiotics. Usually these antibiotics will be prescribed in the form of a pill.

It is important to ensure that the person completes the course of antibiotics as per the GP instructions on the box of the medication, even if they seem better quickly.

Reassure the person If the person you care for has a UTI, they can probably tell that they don’t feel quite right.

Explaining what is happening to them in a language they understand (for example, “you have a water infection, don’t worry it will clear up with these tablets”) can allay their fears and aid their recovery.

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If their infection has caused them some new problems such as incontinence or increased confusion, try to remain patient and kind about these. A UTI can cause a person who is usually continent to have a few accidents. They will most likely feel very embarrassed and guilty about this which can lead some people to stop drinking in the hope that it doesn’t happen again. This kind of thing only worsens the infection and can delay their recovery.

Monitor Stay in contact with your GP about any improvements you notice or about whether any follow-up or further assessments are required.

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Chapter 2: Delirium Delirium can often be overlooked when a person has dementia because healthcare professionals may not know what level of “confusion” is normal for them. But if it goes undetected for too long, delirium can result in a person with dementia becoming very unwell and needing hospital care.

This guide aims to help you understand, spot and treat delirium in a timely and efficient manner.

What is delirium?

Delirium is a term used to describe a sudden onset of confusion. Having dementia significantly increases the likelihood of developing delirium but this condition can affect anybody, regardless of age or medical history. Your knowledge of the individual’s usual abilities, behaviours, habits and routines is absolutely essential in diagnosing and treating it.

What does delirium look like?

There are two types of delirium; “hyperactive delirium” and “hypoactive delirium”. A person may have either hyper or hypoactive delirium or they may have a combination of both (known as mixed delirium).

1. Hyperactive delirium • Heightened emotions • Agitation or restlessness The person may appear more agitated or emotional. Their memory may be worse than usual and their speech may seem muddled. With this type of delirium, the person can often seem frightened or angry and may experience hallucinations or hold paranoid or persecutory beliefs (for example that they are in prison or that somebody is poisoning their food). In hyperactive delirium, a person may appear to have endless amounts of energy and may need very little or no sleep.

2. Hypoactive delirium • Lethargic • Withdrawn • Difficulty maintaining concentration • Sleepy • Low energy levels

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The person may appear more lethargic or withdrawn than usual. They may find it difficult to concentrate or focus on the thread of conversation when they are talking or when you are talking to them. With this type of delirium, a person can often seem very withdrawn or depressed. In hypoactive delirium, a person may appear to have no energy and may spend most of the day and night sleeping. Although this type of delirium is more common, it is also harder to spot.

What causes delirium?

Common causes include: • An acute infection (commonly urine or chest infection) • Constipation • Pain • Medication • Dehydration • Change in environment/ routine Risk factors for developing a delirium include age, frailty, poor mobility, poor sleeping habits and dementia. Most people with dementia will have a high risk of developing delirium.

CASE STUDY Maria told Pat that she was feeling a bit bunged up and hadn’t been to the toilet. Pat bought some prune juice and left it in the fridge. The next day Maria suddenly got up and tried to leave the house. When Pat asked her where she was going, she started crying and said she needed to go home. Pat managed to calm her down but she remained very distracted and distant.

The following morning, Maria went into the garden in her pyjamas – which she wouldn’t usually dream of doing – saying she had to find Tina, the family dog that died 20 years ago.

She then accused Pat of kidnapping the dog. After getting Maria back inside, she seemed back to normal for an hour or so and then started crying about her parents.

Pat was worried because this level of confusion wasn’t right for her mum. She also knew that a sudden increase in confusion can be a sign of delirium. Pat looked in the fridge and saw that the prune juice she’d bought remained untouched so she gave Maria some laxatives prescribed by the GP. After a day or two, Maria passed a very large bowel movement and her confusion improved.

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Can delirium be prevented?

As with most things, prevention of delirium is better than cure. Tips for preventing or avoiding delirium include;

Eating and drinking • Encourage drinking by using juices, cordial or other flavoured drinks that the person enjoys.

• Find out the person’s favourite food and snacks and allow them to graze as well as have meals.

• If the person is having difficulty feeding themselves or getting themselves a drink, simplify the task by using adaptive cutlery or crockery.

• Ensure that snacks and drinks are placed within easy reach and that they are accessible e.g. place straws in drinks. Regularly offer these to people as they may not ask for them unless prompted.

Managing pain • Because dementia changes a person’s ability to communicate and problem-solve, their ability to report pain may be reduced.

• This means that although people with dementia experience pain in the way that we do, they are unable to do the things we can to make the pain improve (for example, ask for pain relief, get a hot water bottle, exercise).

• This can cause changes in a person’s temperament or behaviour and can trigger a delirium.

• Recognise the non-verbal signs of pain and discomfort (body language, facial expression).

If the person has an injury or a condition likely to cause pain (such as a broken bone or a pressure sore), ensure that they receive regular pain relief as their ability to request this is likely to be impaired.

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GP Top Tip “If a patient with dementia has a known cause for continuous pain (ie fractured hip or chronic arthritis) an analgesic patch may be the best way to provide pain relief, rather than relying on the patient to ask for medication.” Dr Julia White

Mobility • Keep the person up and active as much as possible. Remember, “if you don’t use it, you lose it!”

• Even if the person can no longer walk, try to get them to do as much as their abilities allow; for instance, sitting in a chair at mealtimes and getting in and out of bed with assistance.

Toileting • Prevent constipation by keeping the person active, ensuring they drink enough water and eat plenty of fruit and vegetables.

• Make toileting easier with regular prompts • Address any mobility problems that may make it hard for them to get to the toilet.

Stimulation • Loneliness and boredom can significantly increase a person’s chances of developing delirium.

• Keep the person connected to the outside world with phone calls, visits or even watching television/listening to the radio.

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• Identify what activities are meaningful to the person and see if there’s a way that they can participate in them, even if it’s in a modified way. For example, if Joan used to love going on holiday you don’t necessarily need to start booking flights for her, you can get out her photo albums so that she can look at her old holiday snaps, or place photographs/postcards around her.

Sleep • A normal sleep/wake cycle is crucial to delirium prevention and treatment. This means making sure that the person is awake during the day and sleeping at night.

• Daytime napping may be necessary for some people but remember the mantra, “active days make for peaceful nights” – activities, routine and companionship can help a person distinguish between night and day as well as tire them out so that they get a proper night’s rest.

Can delirium be treated?

It’s important to identify what has caused the delirium so that the underlying cause can then be treated. For example, a person may have a urine infection that has caused a delirium. The delirium will not improve until the urine infection has been treated with antibiotics.

Provided the underlying cause is addressed and resolved, delirium can improve in days or weeks. For a person with dementia, it can take longer for the delirium to resolve. People who have recovered from delirium can often experience frightening or upsetting memories of how it felt to be delirious.

Having a delirium makes a person more likely to get a delirium again in the future. However, if you can spot the warning signs in the person you care for it may be possible to identify and treat the underlying problem before it progresses into a full delirium.

What can I do to help?

1. Communicate If your loved one seems suddenly more confused, paranoid or lethargic, make sure you notify your GP as soon as possible. Your GP may want to assess the person by listening to their chest, testing their blood or analysing a urine sample to investigate whether there is an underlying cause. The quicker they can diagnose, the quicker the delirium can be treated.

2. Understand It can be scary and upsetting to see a dramatic change in how a person thinks or behaves.

Delirium can cause a person to behave in a very challenging way that is out of character for them. Keep in mind that they are acutely unwell and that given the right treatment this should improve.

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3. Visit It is tempting to tell family or friends to stay away when a person is delirious. You may feel as though you make things worse when you’re there or it may feel uncomfortable and distressing to see somebody experience delirium. Only you know what is right for you, but generally speaking, having familiar people visit and spend time with the person helps them to feel safe and less anxious about what they are experiencing.

4. Reassure People with delirium often fluctuate between moments of lucidity and confusion. Vivid dreams and strange ideas can sometimes make a person feel that they are going mad. Reassure the person that they are safe and that they have an underlying medical problem (for example an infection) that has made them feel like this. Remind them of where they are, why they are there and that they are a bit mixed up at the moment. Try not to argue or contradict any mistaken beliefs a person may have; if necessary change the subject and stick to comforting, familiar topics.

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Chapter 3: Pnuemonia Although pneumonia can be a very serious illness for people with dementia, requiring immediate hospital care, this isn’t always the case. In fact, many people with dementia recover from pneumonia whilst being cared for at home.

This guide will help you spot the signs of pneumonia and understand it better so that you know when – and how – to deal with it.

What is pneumonia?

Pneumonia is an inflammation in the tissue of either one or both lungs that is often caused by a bacterial infection. In a healthy, younger person, the symptoms of pneumonia can often be treated quickly with antibiotics. The risk of developing pneumonia is significantly increased in the elderly, frail and those with other health conditions, for example diabetes, kidney or liver disease. People with dementia are at an increased risk of developing pneumonia as their illness progresses and the severity of the pneumonia also tends to increase. Although many people with dementia recover from their pneumonia, in some cases the development of pneumonia is a sign that the dementia is reaching its end stages. Up to two thirds of people with dementia who die, do so as a result of pneumonia.

What causes pneumonia?

There are several factors which increase a person’s risk of developing pneumonia. They are;

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• Frailty – older people tend to be frailer and less active than younger people and are likely to have difficulty clearing secretions (saliva, pus, mucous and other liquids) from their lungs as a result. These secretions can collect and grow bacteria on them which can become harmful.

• Weakened immune systems – poor nutritional intake and multiple medications can weaken a person’s immune system and make it more difficult for their body to fight off an infection.

• Other health conditions – people with other serious health conditions (for example diabetes, HIV, Parkinson’s disease or those who have undergone chemotherapy) or those with pre-existing lung conditions (for example asthma or Chronic Obstructive Pulmonary Disease) are at an increased risk of developing pneumonia.

How can I spot pneumonia?

Like most things, early detection can lead to better recovery. Signs that a person may be developing a pneumonia include; • Appearing generally unwell or lethargic • Breathlessness, laboured breath or wheezing when breathing • A productive cough, often with green or yellow mucus • Fever • Chills • Recent recovery from a cold or flu and then suddenly getting worse • Pain, including skin tenderness, chest pain and pain in the sides • Delirium is commonly caused by an acute infection, commonly urine or chest infection.

You may notice that the person becomes either increasingly confused and agitated or increasingly drowsy

CASE STUDY Maria is usually up and dressed by 7am, but over the past few days she has been staying in bed until noon and becoming more and more sleepy. Pat tries to wake her and help her out of bed, but Maria resists and begins to cough. The cough sounds very deep and bubbly and once she has started, it takes several minutes for her to stop.

Pat remembers what she has read about delirium and realises that this sudden drowsiness could be a sign of an underlying problem. Two weeks ago, Maria had a head cold which seemed to go away on its own, but now Pat wonders if her mum has developed pneumonia?

She calls the GP who comes out to see Maria and confirms that she does have a pneumonia.

She prescribes antibiotics and Pat works really hard to get Maria eating and drinking again as well as taking her tablets. Within a week, she’s on the road to recovery.

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What to do if I suspect pneumonia?

If you spot any of the above symptoms it is essential to notify the person’s GP as soon as possible. Pneumonia can be diagnosed by your GP or doctor by examining the person, measuring the heart rate, the rate of breathing, the temperature, blood pressure and oxygen levels. In some cases, a blood test or chest x-ray may be used to diagnose although this is not always necessary.

Depending on the severity of the infection as well as the individual’s circumstances, a person may be treated either at home or in hospital. In bacterial pneumonia cases (the most common type of pneumonia), antibiotics will be prescribed. These will either be via a drip or in tablet form. The person will need rest, fluids and lots of calories to fight off the infection.

How can I prevent pneumonia?

As a person becomes older and as their dementia progresses, it may not be possible to avoid them developing a pneumonia. However, there are practical steps you can follow to reduce an individual’s risk and keep them as healthy as possible for as long as possible. These include:

Good oral hygiene Keeping the mouth clean and comfortable is really important for many things, but scientists over recent years have clearly linked poor oral care with respiratory illnesses like pneumonia.

In people whose oral hygiene is poor, bacteria can grow in the mouth which can be inhaled into the lungs. This oral bacteria is the same pathogen that causes some strains of bacterial pneumonia. Follow these steps for good oral hygiene; • Brush teeth and tongue at least twice a day with fluoride toothpaste • Remove and brush dentures and tongue twice a day • Avoid sugary drinks and snacks • Visit the dentist regularly

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Boost immune system A strong immune system is essential for warding off all kinds of bugs. Key tips for a strong immune system include: • A balanced diet – ensure that the person is well nourished • Adequate hydration • Avoid unnecessary medication – as people get older they tend to accrue more and more different types of medication which can sometimes have an effect on their immune system.

Ask your GP to review their medications.

• Avoid people with cold/flu – these bugs can spread easily so if you or someone else the person with dementia comes into contact with develops a cold, avoid the person if possible.

If you can’t do that, ensure that you are coughing and sneezing into a tissue which you then dispose of and you’re keeping your hands clean with soap and water.

Look out for any swallowing problems As dementia progresses, some people develop swallowing problems that can lead to aspiration pneumonias, which is when a person coughs or chokes during eating or drinking and the food or drink enters the lungs. Take note of any of the following signs of discomfort/distress and contact the GP who may be able to refer you to a Speech and Language Therapist; • Coughing during or after swallowing • Holding food in the mouth instead of swallowing • Spitting out food • Eating very quickly or drinking large gulps

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Positioning when eating It sounds obvious but ensuring that people are set up properly to eat can not only improve the amount of food and drink they take (important for the immune system), but can also help them swallow properly. Make sure that you have checked the following; • The person is clean, doesn’t need the toilet and is sitting in a chair • Ensure that dentures are clean and worn correctly and glasses are worn if needed • Ensure they can use the crockery and cutlery you’ve given them or they have support if needed

Activity and mobility Inactive and bed-bound people with dementia (i.e. those who spend a lot of time laying or sitting) are at an increased risk of developing pneumonia, as they are not taking regular deep breaths to oxygenate their lungs. Staying active, having regular walks, and even making sure they take ten deep breaths every hour allows the lungs to oxygenate and ventilate properly, which is important in preventing lung infections.

Vaccinate The person you care for may be eligible for a free seasonal flu or pneumonia vaccination.

Contact your GP to discuss further.

GP Top Tip “Carers are also entitled to a flu vaccine on the NHS. Ask your GP”. Dr Julia White

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Chapter 4: Distressed behaviours Although changes to behaviour can be an inevitable part of the dementia journey, distressed behaviour is not. In fact, it can often be a sign that a person with dementia is not feeling well and may need medical intervention.

This guide will help you spot the signs and treat the causes of distressed behaviour as quickly as possible, so that a hospital admission doesn’t become necessary.

What is distressed behaviour?

(Also known as: challenging behaviour, aggressive behaviour, changes to mood, BPSD, agitation, tearfulness, anxiety, wandering) Changes to behaviour, especially those that seem out of character for the person we care about, can be extremely difficult for relatives, friends and carers to manage. Although changes to behaviour can be a part of some advancing dementias, many people living with dementia can experience or exhibit distressed behaviour at times.

Distressed behaviour describes emotions and actions that cause the person experiencing them some discomfort or distress. Examples of distressed behaviours include the following; • Shouting • Agitation • Aggression • Paranoia • Anxiety • Repetitive questions • Wandering • Sadness including tearfulness Healthcare professionals sometimes refer to this as “challenging behaviour” but critics of this term argue that calling behaviour “challenging” implies that the things people with dementia do and say are a “problem” that we have to deal with. It’s much more helpful to think of these behaviours as symptoms of an underlying problem, pain or illness, or as a way of communicating distress. This should prompt us to try to understand the meaning behind the behaviour and find out how best to help.

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Changes to behaviour, especially those that seem out of character for the person we care about, can be extremely difficult for relatives, friends and carers to deal with. A diagnosis of dementia can cast a shadow over a person’s life and we begin to interpret everything they say, do and feel as symptoms of a medical problem. It’s easy to forget that people with dementia are individuals who have personalities, opinions, passions and eccentricities just like everybody else.

What causes distressed behaviour?

When you or I feel upset or frustrated, there are many things that we can do to manage our emotions. We all use coping strategies without even realising we are doing so; for example, if you’re feeling angry you might go for a walk to clear your head; if you are in pain you might take a painkiller, and if you are worried you might call a loved one and talk things over or put on the TV as a distraction.

Having dementia doesn’t change the way that you experience life’s difficulties and emotions.

What dementia can affect is a person’s ability to think of coping strategies and the ability to carry them out. For example, how can somebody go for a walk to clear their head if they can’t get out of their chair without assistance? How can they relieve their pain if they can’t work out what this horrible sensation that they are feeling means? How can they talk through their worries with a loved one if they can no longer articulate what’s inside of them?

Dementia changes a person’s ability to communicate as well as their ability to reason (think things through) and problem solve. This causes a great deal of frustration and stress for the person living with dementia and this can also be difficult for the people around them too. More often than not, “challenging behaviour” such as anger and agitation is the result of the person with dementia feeling misunderstood or unheard.

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Without their usual coping strategies, people with dementia search for alternative forms of expression and often this expression takes the form of behaviour. For example, if Mr Robinson has a bad headache, his dementia may prevent him from being able to resolve this by understanding his head is painful and would benefit from taking a painkiller and then laying in a dark and quiet room. Frustrated, these circumstances may cause him to become angry and tearful and when asked what is wrong he may shout or become quiet. If the message that we take away from this is just that Mr Robinson is angry, we miss the communication in his behaviour and therefore the opportunity to help him.

Common messages hidden within distressed behaviour include; Pain – Research shows that people living with dementia are less likely to be offered or receive adequate pain relief than people who don’t have dementia. This isn’t because people with dementia experience pain differently to us, but it might be that they find it difficult to recognise pain, locate it to a part of their body and report it to a doctor or loved one.

Delirium – Delirium is a sudden state of increased confusion usually caused by an underlying factor such as infection, pain, constipation or dehydration. A person exhibiting signs of delirium may experience changes in their behaviour that can be difficult to manage. Understanding and recognising these behaviours help carers identify a delirium and ensure that underlying causes are identified and treated.

Boredom – Most people living with dementia will have had a lifetime of roles and responsibilities, as part of a family and a community, as well as professionally. These roles and the tasks we perform to fulfil them, are where people find meaning and fulfilment in life.

The way that we care for people living with dementia can sometimes involve us removing or restricting their roles and responsibilities and some of these adjustments are necessary and unavoidable. However, people who have no roles, responsibilities or autonomy over their daily routine can often be left with a feeling of purposeless or unfulfillment. Feelings of boredom can lead to frustration, irritability, depression and agitation.

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Depression and anxiety – These psychological conditions are significantly more common amongst people living with dementia and are often overlooked because the symptoms can be mistaken for part of the person’s dementia. Changes in the brain as well as in a person’s abilities and circumstances can lead to distressing behaviours such as disturbed sleep, reduced concentration, agitation, restlessness and wandering.

Versions of reality – You may find yourself in an uncomfortable situation when a person with dementia talks about things that you know are factually incorrect. It is not uncommon for people to believe that they are much younger than they are, that their parents are still alive or that they need to go out to work or to pick up children that you know are now pensioners themselves. In situations like this, carers sometimes get bogged down in fact and detail which can often lead to confrontation and feelings of anxiety or loss. A bit of detective work can help you to sift out the meaning from the communication. For example, if somebody talks a lot about needing to go to work or pick up their children from nursery, you could interpret that those roles (employee, mother) brought meaning into their life. As a carer you might want to talk to them about these roles and listen to their stories. You may want to think about ways that you can create a meaningful role in their life now, even something as simple as supporting them to do chores or parts of their daily routine.

GP Top Tip “Labile emotions (swinging from happy to suddenly very tearful and vice versa) and loss of inhibitions are often so distressing for carers that they find them too difficult to talk about. But try not to feel embarrassed, they’re all part of the dementia journey – and your GP might be able to help.” Dr Julia White

How can I manage this?

The most important skill to develop is to not take difficult behaviour at face value. Like everyone, people with dementia do and say things for a reason that is meaningful to them.

What may appear irrational or illogical to us makes sense to them and it is our job to try to work out the message hidden in the behaviour. Remember that dementia changes the ability to communicate in such a way that we ought to think of dementia as a different language. If we want to be able to communicate efficiently with the person, we have to learn to speak the language of dementia. That means we need to watch what the person is doing, not just what they are saying and repeatedly ask yourself the question, “She seems angry; what is she trying to tell me?”.

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Keep a behaviour diary Keeping a record of what a person does and when can give you an idea of what their message might be. If the person becomes frightened and tearful four times a day, try to take note of the time to help work out what the underlying need is. I used to look after a lady who was very calm and pleasant most of the time, but four or five times a day she would become extremely agitated and aggressive. Because she had a diagnosis of dementia, people didn’t think to interpret this behaviour to try and find the meaning and instead, attributed everything she said and did during the time to her dementia. I started to note the times of the day this happened and worked out that the episodes coincided with episodes of incontinence.

Was her aggression an attempt to communicate that she was feeling panicked because she needed the toilet? From noting the times I was able to pre-empt her episodes and ensured that I regularly took her to the toilet around the time that she would have become distressed. Once we had established this new routine, we noticed that she no longer had episodes of aggression and agitation because we had understood her communication.

Try to identify triggers As well as identifying patterns, a behavioural diary may help you to identify triggers or causes of distressed behaviour. To get the best information from a person’s behaviour, it is important to consider as many details as possible. During or after an incident it may be helpful to ask yourself the following questions; • What time of day did this happen?

• Who was present?

• What room were we in?

• What were we doing?

• What did the person say?

• What was their behaviour like?

• Did anything seem to make things calmer?

• Did anything seem to make things worse?

• How long did it last for?

• Could they remember the incident afterwards and if so could they tell you what happened?

Once you start analysing episodes of distressed behaviour in this way you may start to identify triggers. For example, aggressive or violent incidents that occur in care homes often do so in the bathroom when people with dementia are being washed or are using the toilet. This allows staff to understand how these circumstances might be triggering the person. These include;

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• The person is in a small room with a carer they don’t recognise • There is no natural light in this room • The person’s clothes are removed so they may feel embarrassed or undignified • The carer performs intimate care that the person may not understand so they shout and try to resist Once you identify a trigger, you can think of ways to either remove the trigger or, if this is not possible, add extra support for the person at times when they are likely to be triggered. If you were problem-solving around the above scenario, you may consider the following strategies; • Can the person have a strip wash with a warm bowl of water in a room they are familiar with if they don’t like the bathroom?

• Can they be encouraged to do as much of the task independently as they can, especially intimate areas?

• Make sure the carer keeps reassuring the person and talking them through the task.

If any of these strategies help, you can then start to think about which one was most useful and make it a regular part of their daily routine.

CASE STUDY When out shopping last week, Maria misjudged a step into the supermarket and fell over. Pat was with her and helped her up. Shop staff were very nice and wanted to call an ambulance but Maria said she was okay, was walking fine and was clearly very embarrassed by the fuss.

But for the next few days Maria was in a bad mood; withdrawn and irritable. Eventually she swore at Pat, threw a meal she’d just cooked on the floor (a favourite meal that Pat had made specially), and kicked her daughter out of the house. Pat was very upset and cried for a long time. When she eventually returned to the house she found Maria sitting in the dark with her coat and shoes on. The food is still all over the floor.

As Pat helps Maria take her coat off, she notices that her left wrist is red and swollen. When Pat touches it, Maria tries to hit her and swears again. Pat takes her mum to A&E where an x-ray reveals a broken wrist which must have happened during the fall in the supermarket.

Maria has a cast and some painkillers and seems much more like her usual self. Pat realises that the change in her behaviour must have been caused by the pain of her broken wrist.

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Communication/Non-verbal communication We know that a person’s ability to communicate is affected by their dementia, but we also need to think about the way in which their dementia should change our communication, too.

Remember that dementia is a language and we need to adapt our communication in order to accommodate the needs of a person living with dementia.

Here are some key tips to consider when communicating; • Look at the person when you are talking to them • Minimise any environmental distractions, for example turn the TV down/ off and make sure that you have their full attention • Speak slowly and get straight to the point • Pause in between sentences to ensure that they have understood you • Repeat yourself as often as necessary • Although people with dementia often lose the ability to communicate verbally, they often retain the ability to communicate non-verbally. This means you should use other forms of communication when interacting with them. For example, gestures, facial expressions and the tone of your voice.

• If somebody is shouting and distressed, try to use a low, soothing tone in your voice. If you match their energy you will likely escalate how they are feeling.

• If you are feeling impatient or stressed out, the person with dementia is likely to pick that up and react to it. Make sure you give yourself a moment to clear your head and keep your composure.

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Reassurance The experience of dementia is frightening and unsettling at times for the people living with the diagnosis. Kindness, patience and an understanding of the reality are key to helping the person living with dementia feel safe and understood. Don’t underestimate the power of a kind gesture like a hold of the hand, a cuddle or a cup of tea.

Look after yourself Distressed behaviours are some of the most difficult elements of dementia that people can experience. For carers, living with or caring for somebody who exhibits these behaviours can cause a great deal of stress, worry and upset. Behaviour of this type can lead to carer burnout which in turn can cause the person with dementia to be admitted into hospital or residential care.

See chapter 8 for ideas about how you can look after yourself.

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Chapter 5: Falls Falling can result in lengthy hospital stays and have a profound consequence on a person living with dementia and the people who care for them, both physically and psychologically.

This chapter will help you understand the main reasons why falls happen and show you the best ways to prevent them.

Why do falls happen?

As people age, changes happen in the body that make a person less steady and more likely to fall. Sensory changes (such as poor vision and hearing), muscle weakness and reduced spatial awareness make it harder for a person to mobilise safely and navigate obstacles and difficulties. Falling is a common occurrence in people over the age of 65, 30% of whom fall on average once a year. As people get older, the frequency of falling increases, with over 50% of people over the age of 80 falling at least once a year. In fact, the commonest cause of major trauma in the UK now is people over 65 falling from less than 2 metres/standing height.

In people living with dementia, their risk of falling is much higher. A person with dementia may have difficulty seeing where they are going or judging distances. They also may have difficulty assessing risk and anticipating things like steps or trip hazards. Changes in the brain may change the pattern of walking, known as a person’s gait. This can lead to shuffling or very slow or unpredictable movements which may increase the likelihood of them losing their balance and stability.

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Falling can have devastating consequences. A fall that results in an injury such as a broken bone can lead to a hospital admission and can affect the person’s ability to walk for the rest of their life. If the person falls and cannot get up, this can sometimes lead to them spending a very long time on the floor which can result in additional problems such as the development of pressure sores, pneumonia and kidney failure.

As well as the physical consequences of falling, the psychological impact can also be significant. Many people who fall experience a loss of confidence in their own abilities and this can lead to anxiety and depression. People who fall may start to avoid activities that they previously enjoyed or performed independently. This can be basic activities such as going to the toilet or higher-level activities like driving or shopping. Whatever it is that the person restricts, there is a clear link between fear of falling and loss of independence and quality of life.

It may not be possible to avoid falls altogether, but here are some helpful tips around minimising risk and knowing how to recover if a person has fallen.

Preventing falls Falls prevention strategies can be focussed on three main areas; the person, the care environment and the care routine.

The person Think about the person’s feet: make sure that the person’s foot health is as good as it could be. Long toenails and foot sores are not just painful; they can also impair a person’s ability to walk which makes a fall more likely. Keeping feet clean, dry and keeping nails and callouses under control can help with overall foot health. Regular podiatry appointments can be organised via the person’s GP. Think about vision and hearing: If a person wears glasses, make sure that they are accessible and that they are wearing them when they get up to walk. Likewise, if a person usually wears a hearing aid, ensure this is in the ear, switched on and at the right level for them to be able to hear comfortably.

Clothing: Being too hot or too cold can influence a person’s risk of falling. It’s good to strike a balance between warmth and freedom of movement. Remember that an older person will feel the cold more than a younger person and that they may even be cold in warm weather. Opt for soft, breathable material that does not restrict the movement of the body. Avoid bulky, rough or itchy materials as these may be uncomfortable.

You should also think about how items of clothing function and whether the person can manage buttons and zips; if this is difficult for the person, you may want to consider elasticated or Velcro fastening garments. Ensure that clothing fits well with no trailing material that they might trip over.

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Footwear: Many people prefer to wear cosy slippers in the home, but choosing the wrong footwear can significantly increase the risk of falling. Footwear that is loose or has a “flip-flop” style back should be avoided as it can slip off and cause a trip. The best type of footwear is a closed shoe style slipper that fully closes around the foot and has a durable sole with non-slip grip on it. Some people like to wear trainers in the house for this reason and there are options available that don’t involve shoelaces (which can again come undone and pose a trip risk).

Health: It sounds obvious, but just keeping an eye on a person’s general health is an important part of minimising their falls risk. Untreated problems with blood pressure or changes in hearing and vision need to be identified and managed as soon as possible. Make sure that people are eating and drinking enough and that any pain the person might be experiencing is identified and treated. People who experience a delirium are at an elevated risk of falling so keep your eyes peeled for any signs of increased confusion or infection and notify a GP straight away.

Medication: Some types of medication can make people less steady and more likely to fall.

In addition, the more different types of medications a person takes, the more likely they are to develop a delirium or be at risk of a fall. Speak to the person’s GP or pharmacist and ask whether they still need to be on all the medication that they take, check that the side effects of the medication don’t increase falls risk and ask whether they are happy with the way the different medications interact with each other.

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The environment Declutter: Use your common sense when looking at the person’s home environment. Remove loose rugs and mats, secure tangled telephone wires and keep them off the floor. Curled up edges of carpets are common trip hazards that can be easily minimised by using gaffer tape to make this flat and secure if removing it is not an option. Clutter such as old newspapers, piles of laundry or other things that the person may like to collect should be removed from thoroughfares so that the person has clear paths from one area to another free of hazard and trip risks.

Equipment: Not all falls occur when a person is walking; other activities such as getting in and out of bed, onto a chair or on and off the toilet takes a lot of strength and effort and some people can sustain falls during those activities. If this is a concern for you or the person with dementia, ask your GP if you can be referred to an Occupational Therapist (OT). OTs are experts in environmental adaptation and can formally assess a person’s home with a view to falls risk. They may provide you with equipment such as raised chairs and toilet seats (which make standing easier), grab rails as well as technology such as a pendant alarm (an alarm around their neck that they can press to call for help if they are on the floor and there’s nobody around) or a falls sensor (a pad that can be inserted under a chair or mattress). An OT will also assess how a person’s function may influence their falls risk and try to work out solutions.

For example, if a person experiences urinary urgency (the urgent need to wee without much warning), they may then rush to the toilet and risk falling as they do so. An OT might spot that problem and provide them with a commode or urine bottle so they don’t need to hurry.

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Signage: Even if the person has lived in their home for a long time, their dementia may make it harder for them to find their way around or be able to find items that they need. Labelling cupboards and putting frequently used objects (like teabags, sugar, teaspoons etc.) out in full view may help with this.

Lighting: Everybody’s vision deteriorates as we get older and age-related conditions such as glaucoma, cataracts and macular degeneration become increasingly common in the over 65s. In addition to physical changes within the eye, dementia can disrupt and impair the way that the brain interprets information that the eye can see. Effects of this depend on the type of dementia a person has, but commonly include a reduced ability to perceive contrast (for example one or more objects from their background), colours and may misinterpret visual information (for example they might think a door mat is a hole in the floor, a shiny floor is slippery or wet or that a coat hanging on a peg is a person). Ensuring that areas are well lit and that the person’s ability to see is an essential falls prevention strategy. Night-time may be a particularly risky time, especially if the person wakes in the night to use the bathroom.

Consider leaving lights on in halls and bathrooms or if that isn’t possible (or if they are switched off by the person) consider a night light or motion sensor lighting.

CASE STUDY Since the fall in the supermarket, Maria’s confidence has taken a bit of a knock. She seems less sure on her feet and Pat is particularly worried about her walking to the bathroom at night.

One morning Pat finds Maria laying on the upstairs landing having fallen over. Maria can’t really tell her what happened or how long she’s been on the floor, but after last time, she decided to call an ambulance and the paramedics gave her the all clear. Pat and her husband privately discuss the situation and whether this is a sign they should consider putting Maria in a home. But Pat always promised her mum she would keep her at home for as long as possible so she goes to Maria’s house and has a look at where she fell.

The bulb had gone in the hall light so Maria must have tried to walk in darkness. Piles of laundry and her magazines line the corridor and Maria won’t have been able to see them in the dark. Pat looks at the rug on the upstairs landing; a corner of it has curled up and could easily be tripped over. Pat discusses this with her GP and a referral is made to a falls team in the community. An occupational therapist comes out and installs rails for Maria to hold onto in the corridor, they remove the rug and clutter and install an automatic night-light in the hall. They put a commode in the bedroom for when Maria feels too tired or groggy to walk to the bathroom. Maria is given a personal falls alarm that alerts Pat if she ends up the floor and a physiotherapist gives Pat and Maria some exercises to practice to rebuild her confidence. Soon Maria is confidently walking again and Pat has peace of mind that if the worst should happen, she can get help straight away.

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The routine Anticipate needs: If you worry about a person getting up and walking around when you are not there, you might want to start thinking about reasons why they might get up. If a person is safe to walk on their own, they should be encouraged to do so as much as possible to maintain strength and balance. You may find it useful to leave key items, especially things that might rush them, close by them. For example, if the person often gets a sudden urge to use the toilet and the toilet is all the way upstairs, you may want to think about getting them a commode.

If the phone is in a different room and they rush to answer it, you might want to get a cordless phone that they keep next to them. Make sure that they have water and snacks around them.

Keep active: If someone has fallen in the past or if they seem a bit unsteady on their feet at times, it is natural for you to worry about their risk of falling. Sometimes, worrying about falling means that we discourage or actively prevent people with dementia from being active and getting up and moving around. In the short term, this can make us feel less worried because the person may be less likely to get up and walk around when they are alone. However, in the longer-term that often creates more problems because restricting mobility will inevitably make mobility poorer which in turn increases the risk of falling. Keeping active and mobile are important parts of a person’s health and well-being generally and, in particular, reduces their risk of falls by maintaining confidence and stability. Exercise could range from basic stretches whilst sitting in a chair or lying in bed, to carrying out normal parts of your daily routine such as having a wash and cooking or even joining an exercise group. Your GP may be able to advise you or even refer you to a community physiotherapist for further advice.

What should I do if somebody falls?

If a person falls and does not injure themselves and if they are then able to get themselves up again without pain, you should still notify your doctor that they have fallen. This fall may be a one off or it may be a sign that there is something else going on in the background such as a delirium.

If you did not witness the fall, if the person cannot get up, if they can’t tell you whether they hit their head or if they are in pain, you may need to call an ambulance. A paramedic can help a person get up after a fall and can also assess for any injuries, some of which may not be immediately obvious to you.

People who live alone may have additional risks associated with falling. If they experience a fall when they are alone, they may not be able to call for help and may not be able to get themselves up. This can lead to extended periods of lying on the floor where they may sustain pressure sores or hypothermia. Some people manage this by using pendant alarms (worn around the neck) or for people who may find pressing an alarm challenging, a fall sensor worn on the wrist that can detect whether somebody may have fallen. If the person is able to use a mobile or cordless phone, they may be able to keep this on them by using a belt clip or secure pocket.

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Managing the risk of falls Managing the risk of falls is most successful when it is a group effort led by you and the person you are worried about. If you are concerned about falling or if the person you care for has experienced falls in the past, please speak with your GP about what support is available in your area. This support may consist of some or all of the following, where many of the above factors can also be assessed and discussed.

• A falls clinic • Physiotherapy • Occupational therapy • Equipment and falls technology

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Chapter 6: Malnutrition/Dehydration Some people with dementia experience difficulties with eating and drinking which can lead to serious health issues if they’re left unchecked.

This chapter will help you ensure they receive adequate nutrition and hydration at home, without the need for hospital intervention.

What is happening?

As their dementia progresses, people with dementia are increasingly likely to require some form of support with eating and drinking. Maintaining a healthy weight and ensuring that a person gets enough calories and fluids and appropriate nutrition is important for their general health and well-being.

Changes in a person’s eating habits can be stressful and upsetting for friends and relatives of people living with dementia and it can be a challenge to work out how to support them.

If you notice that a person is losing weight, or if their behaviours around eating change abruptly, for example if they suddenly start to refuse food entirely or display unusual behaviours like spitting food or aggression triggered by mealtimes, you should discuss this with their GP. A GP will be able to assess the person to rule out an acute cause of the sudden change, for example they may have a blister on their gum from ill-fitting dentures that makes eating too painful, or they may have an underlying delirium. Their GP can also refer the person to a dietitian, speech and language therapist or nutrition nurse who can give specialist advice to support you and the person you care for.

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Common difficulties with eating and drinking include; • Reduced appetite • Difficulty recognising hunger or thirst • Difficulties with shopping for or cooking food • Changes in the ability to taste and enjoy food • Swallowing difficulties • Difficulties using cutlery or feeding themselves independently You may find that making small changes to the person’s diet and routine could optimise their ability to eat and drink well. In some cases, a longer-term deterioration in eating and drinking could indicate that the person living with dementia is now entering the later stages of the illness. Your GP will be able to talk this through with you and offer you advice and support.

How can I encourage eating and drinking?

The cause of changes to eating and drinking habits will vary between individuals and it may be a process of trial and error to find a successful strategy to help. Observing the person whilst they are eating, knowing their previous eating habits and preferences.

Reduced appetite Be proactive: There are many reasons why a person with dementia may appear to have a poor appetite. Dementia can make it difficult for a person to recognise the sensation of hunger or thirst and so they may be less likely to ask for food or drink. Similarly, difficulties with memory may cause the person to forget that they haven’t eaten or, in some cases, a person may forget that they have eaten, which can lead to overeating. Regularly offering snacks and drinks that they enjoy is a good way of ensuring that someone is getting the intake that they need.

Get active: The quality of a person’s appetite can be linked with their levels of activity during the day. As we get older, we naturally become less active and burn less calories. Gentle activity and exercise increases appetite and has a number of other benefits for the person living with dementia. Activity also might reduce the risk of constipation which is another common barrier to a healthy appetite.

Mood: Although some level of reduced appetite is common in dementia, it could also be a sign of depression. If you suspect that this is the case, speak to your GP. Get ready to eat: If you are trying to get the most out of mealtimes for the person with dementia, it may be a good idea to look at the whole mealtime routine rather than just the food that is served. It may be helpful to encourage a person living with dementia to use the toilet before they eat and thoroughly clean their hands.

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Cleaning teeth and dentures before meals can improve the taste of food as well as a person’s ability to chew. Think about where the person will eat their meal – if your friend or relative has always liked to eat at a dining table for example, turning down food when it is served to them in bed may be about more than just their appetite. Before eating ensure that a person is sitting comfortably. If they usually wear glasses or a hearing aid, ensure that they are worn and check that dentures are in position and well-fitted.

Health: Think about the person’s general health. Refusing food or not eating as much as usual could be a sign that something else is going on. Pain and constipation may be causing a person to experience a reduced appetite. Additionally, a person may feel exhausted and find that an activity like feeding themselves is too much. In the event of any sudden changes to appetite or if you notice that a person has been losing weight, seek advice from your GP who can investigate and who may be able to prescribe high-calorie supplement shakes to boost intake.

Understanding mealtimes: A person with dementia may find our traditional structure of three square meals a day overwhelming. If there is too much food on their plate they may prefer to leave the meal untouched rather than risk wasting food. Try to provide the person with small portions frequently throughout the day. It can sometimes help to have the person with dementia help you prepare a meal for them. The smells and sounds of food cooking help prepare them for eating and engage their appetite.

Difficulty getting to the shops and cooking If a person has recently started to struggle with preparing their own meals and getting out to the shops, there are ways you might be able to help: Online shopping: This can be a nice activity that you do together and gives the person more control than if you just go out and do their shopping. The person with dementia can still be involved by coming up with a shopping list. It may be that the heavy items like tinned goods and meat are ordered for delivery and that the person with dementia still pops out to the corner shop for milk or fruit.

Making cooking simpler: If the person still enjoys cooking for themselves, you may want to consider adapting their kitchen environment to make them able to do this for longer.

Adaptations may include labelling drawers and cupboards, leaving frequently used items in view and encouraging the preparation of simpler meals like scrambled eggs and boiled potatoes. If cooking has always been a meaningful activity for the person living with dementia, you can ask your GP for a referral to an Occupational Therapist (OT). The OT can perform a “kitchen assessment” and determine whether any adaptive equipment might be beneficial. For example, a perching stool can be used for a person to sit on whilst they cook to save energy.

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Ready Meals: Some people find it easier to have ready meals than to cook every day. If the person you care for prefers this option, keep an eye on the ingredients of the ready meal as some contain high levels of salt or sugar. If you like the idea of readily prepared meals, your GP should be able to advise you as to whether there is a “meals on wheels” service available in your area.

Difficulty recognising food Many older people experience age-related changes to their vision including glaucoma and macular degeneration. Dementia can affect a person’s ability to recognise food and drink as well as other objects, even if they are able to see them. This can impact a person’s ability to eat and enjoy their food.

Optimise eyesight: If the person wears glasses, make sure they have them on when they want to eat. Think about the lighting in the room. A well-lit area, preferably lit by natural light, creates an atmosphere in which a person is most likely to see what is on their plate.

Look at the eating environment: If you are using a tablecloth with a bold pattern or design, this may have an impact on the person’s ability to see their plate. Try to have a singlecolour tablecloth that contrasts with eating utensils. Dementia changes a person’s ability to perceive and distinguish between objects and surfaces, particularly when the background and foreground are similar colours. For example, a person who is served fish with white sauce on a white plate on a white tablecloth might not be able to see anything other than the white.

Similarly, a person who is served water in a glass may not be able to see anything which can lead to spillages and accidents as well as making it unlikely they will drink. When thinking about eating utensils it is important to keep this in mind. People with dementia find it easier to see bold, primary colours so some people use dementia-friendly contrast crockery that is red, yellow and blue and is designed to stand out and help people living with dementia to see.

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Explain and reassure: Preparing familiar food with familiar smells can encourage a person to eat. Sometimes, the reason they don’t recognise food is because the food doesn’t look like anything they have ever seen before. Try to present food in an appetising way and explain what it is.

Difficulties with feeding As a person’s dementia progresses, some find it difficult to feed themselves. This can be for a variety of reasons, including a reduced ability to coordinate cutlery and difficulty recognising objects. Spillages and other difficulties in this area can make the person feel embarrassed and undignified and this could cause them to avoid mealtimes.

Cut up food: Think about whether it would be helpful for you to cut their food up with a knife and fork which might allow them to put the food in their mouth using a spoon. Avoid food that might be difficult for them to get onto their cutlery, for example peas.

Adapted cutlery and cups: Some people find adaptations to cutlery useful. This can involve cutlery with bolstered handles making them easier to grip, or it can involve dual purpose cutlery for example sporks (a piece of cutlery that is part spoon, part fork). Lightweight cups with nonspill lids and two handles can also help people drink without fear of spillage or mess.

Finger foods: If the person continues to struggle with adapted equipment, it might be easier for them to just stop using cutlery altogether and instead eat with their hands. So-called “finger foods” can be a good way of maintaining independence with feeding and allow the person living with dementia to have autonomy over how they eat. Examples of finger food includes: • Fish fingers

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• Sandwiches • Fingers of toast • Pizza • Garlic bread • Quiche • Chips • Sticks of fruit and vegetable • Cake slices • Scones

Changes to eating habits Over time, the number of taste buds a person has decreases. For people living with dementia, there may also be difficulties in recognising flavours and textures that were once familiar.

It’s important to be flexible about a person’s changing needs and that you’re aware that the person may develop a taste for food or flavours they’ve not had an interest in before.

Strong flavours: As taste buds change, some people with dementia start developing an interest in foods that they have never previously liked. This will often be food with strong flavours: spicy, salty or very sweet tastes. If your friend or relative seems to lose interest in the foods that they have always liked, experiment with something different and don’t be afraid to try new things. Spicing up old favourites with extra herbs and spices or extra ingredients like garlic, onion or pepper may also work well. Another option is to keep a well-stocked selection of condiments that can be added to regular meals, for example Worcester sauce, mustard and chutney.

Snacking: Some people with dementia prefer eating little and often to eating three square meals a day. The ideal meal structure would be three small meals a day, supplemented by two to three snacks. For people who are elderly and underweight, the emphasis should be on maximising the amount of calories a person eats. Small changes to diet such as adding butter and cheese to sandwich or toast snacks and using whole milk instead of semi-skimmed may help. Milkshakes made with ice cream can be a nice snack in between meals. For people who overeat, healthier alternatives such as fruit smoothies, fruit and vegetables can be considered.

Drinks: Dehydration is very common amongst the elderly as the aging process makes it harder for us to identify the sensation of thirst. Generally speaking, a person needs around 2 litres (4 pints) a day to remain well hydrated. Dehydration can cause a range of problems including tiredness, constipation, increased risk of urinary tract infection and increased confusion. You may find that some people do not like the taste of water and encouraging people to drink can be a challenge. Using lots of different types of liquid can help; milk, cups of tea and coffee, fruit juice, fizzy drinks and cordial all help. Jelly, ice lollies and soup also contribute to a person’s fluid intake.

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CASE STUDY Maria has always been slim, but she seems to look more frail. Pat tries to fatten her up by increasing her portion sizes, but Maria looks at the food and often doesn’t like to even touch it.

Sometimes Pat comes in and finds empty biscuit packets and chocolate wrappers in the house. This annoys her because it seems to explain why Maria won’t eat her meals – she ruins her appetite with junk food. Pat refuses to buy any more snacks but Maria still won’t eat her three square meals and starts to lose weight. Frustrated, she speaks to the GP who refers her to a dietitian. The dietitian explains to Pat about the changes in appetite and eating habits that can happen as part of the dementia process. They talk about Maria’s attitude to food and Pat tells him that in the war, food was very strictly rationed and therefore Maria has always been very careful not to waste food. Pat reflects that if the portion sizes she serves Maria are too large, Maria would rather not touch the meal at all than risk wasting food if she thinks she can’t eat it all. The dietitian recommends several small meals a day with the option of snacking in between. He also prescribes nutritional supplement drinks for her use between meals or when she doesn’t feel like eating. Maria seems to really like the chocolate flavoured drink and happily has one of them a day.

Swallowing Some people with dementia develop difficulties with their ability to swallow food and drink.

These difficulties can cause the person to cough or choke and may make them fearful of eating and drinking. Signs that a person may be experiencing difficulties with their swallowing include: • Coughing after eating or drinking • Swallowing the food after not properly chewing it • Holding the food in the mouth for a long time • Avoiding or spitting out food that has a tough consistency that might make chewing more difficult If you suspect that your friend or relative has difficulty swallowing, contact your GP and request a referral from a Speech and Language Therapist (SLT).

Further help and advice Managing difficulties with eating and drinking can be really challenging. If you are worried about a loved one, remember that you can access specialist advice and input from the following professionals: • GP • Dietitian • Speech and language therapist • Nutrition nurse

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Chapter 7: Support in the community for people living with dementia People with dementia sometimes report feelings of isolation and loneliness living with the diagnosis. Even those who are lucky enough to have friends and relatives close to them have to renegotiate their relationship with themselves and the world around them. Luckily, there are many pockets of support around for people to tap into as they wish.

Healthcare professionals The GP should be the first line of support with the everyday issues relating to a person’s health and wellbeing. Some people avoid seeking help from doctors, but the fact is that the better the GP knows the person with dementia, the more information they will have about them and therefore the better quality of care they will be able to offer. A GP should review the health needs of a person with dementia at least once a year and monitor the progression of their dementia. The GP is also able to refer people with dementia on to specialist services as and when required. Services they may have access to include; • Psychologists, mental health specialists and liaison psychiatry services • Specialist dementia nursing services • Physiotherapists • Occupational therapists • Audiologists • Dietitians • Speech and language therapists • Falls clinics

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GP Top Tip “Most GP practices will have a ‘care plan’ to fill in for patients with dementia and have yearly reviews of this. This records the patient’s current baseline and health. It also keeps records of carer’s contact numbers and any power of attorney documents. Ask you GP about this.” Dr Julia White

Memory clinic The majority of people with symptoms of dementia are assessed and diagnosed through a memory service, usually accessed directly through a GP referral. Memory clinics usually have a number of different healthcare professionals working together as a team. This team will consist of psychiatrists, therapists, nurses and social workers. As well as diagnosing dementia, memory clinics are often involved in monitoring people with a diagnosis of dementia and can offer specialist advice and interventions when a person’s dementia changes; for example, when distressed behaviours or increasing care needs become a feature.

Social services A social worker can be accessed through your local council and they can be an important source of support. Social workers can assess a person to determine whether support at home from care workers could keep people in their own homes for longer and keep them safe and supported. These services will be means tested and there will be a charge for some people.

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Social workers can also provide advice regarding further support services in the community, for example advocacy services, and can make referrals for people to attend community organisations such as day centres and activity groups. They can support with finances and ensure that a person, and if appropriate their carers, are receiving all the benefits that they are entitled to.

Charity/not-for-profit organisations Charities and not-for-profit organisations provide key support and services in local communities for people living with dementia and those close to them. Directly contacting organisations such as Age UK, Dementia UK and Alzheimer’s Society is a good first step to finding out what is available in your local area. For those people who can use the internet, Alzheimer’s Society also has a useful tool on their website called “Dementia Connect” where it’s possible to search for resources by postcode. Please find a link to that page here.

Services that may be available in your area include; • Peer support services where people living with dementia meet regularly to support each other and share experiences.

• Dementia advisers are community based support workers who provide a free service to people living with dementia and their friends and family. Dementia advisers can tell you exactly what services are available in your area and signpost people to additional support.

• Dementia cafes are local coffee and tea mornings often held in community centres specifically geared towards people living with dementia and their carers. These social groups are designed to be supportive safe spaces for people who may feel nervous or overwhelmed by the prospect of socialising.

• Activity groups such as “singing for the brain” choirs, walking groups or art groups can give a person with dementia something to look forward to each week and a sense of purpose.

Staying connected to community and to the activities that have always been meaningful to a person is an important way of creating well-being and a sense of fulfilment in a person with dementia.

• Handymen schemes are available in some areas and provide trusted and reasonably priced (sometimes free) services to people living with dementia. They can be asked to help with small jobs around the home like changing lightbulbs or can support with larger repair works.

• Admiral nurses are specialist nurses available in some areas provided by Dementia UK. These nurses support people with dementia as well as their families.

• Advocacy services can help people sort out their finances and some legal matters. As well as providing free advice around money management and debt, they are also able to ensure that the person living with dementia receives all the benefits they are entitled to. Some advocacy services are able to support with Will-writing and decisions relating to appointing powers of attorney.

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Useful numbers • Age UK 0800 169 2081 • Alzheimer’s Society 0300 222 11 22 • Dementia UK 0800 888 6678

CASE STUDY Although Maria is settled at home and has someone visiting her every day, Pat sometimes feels that she is letting her down. Her mum raised many children and grandchildren and always had a role and a purpose. Now she sits around watching television all day.

Pat has tried to get Maria out in the garden with her but she refuses, saying, “I can’t do anything now, what’s the point”. Pat wants to find something for her to do so she speaks to her GP and together they look on the Alzheimer’s Society website which lists all the local services in their area. They find the contact details of Martin, a dementia adviser.

Martin comes to visit and asks Maria about her interests and hobbies. He learns about her interest in singing as well as her gardening skills and recommends two community groups run by and for people with dementia and their carers. At first Maria is not interested, saying that she doesn’t want to socialise with a group of old people with dementia as she will find it depressing. However, Pat writes down all the details and keeps checking in with her on the day of the groups to see if she has changed her mind. One day, Maria agrees to go to the singing group and a delighted Pat drives her there. The choir is made up of people with dementia and their carers and Maria soon finds friends as well as people with more advanced dementia than her who she takes a nurturing role with. She now goes to every singing and gardening group and they’re the highlight of her week.

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Chapter 8: Support in the community for you Many people who care for those living with dementia do not even consider themselves to be carers. They think of themselves as spouses, children or friends of the person with the diagnosis and therefore might not acknowledge the extent of the support that they are offering – and what impact it’s having on their own lives.

This guide will explain why it’s important for you to have support too and where you can find it.

Receiving a diagnosis of dementia can often be a life-changing experience both for the person receiving the diagnosis and those who love and care for them. Sometimes this diagnosis can be met with sadness and trepidation. Sometimes, it will be a relief to finally have an explanation for some difficult changes and experiences that have slowly been increasing over a period of time. Whatever the reaction to the diagnosis, the person living with dementia will likely be offered services and support to help them come to terms with the diagnosis and start to make plans for the future.

Carers of people with dementia, in contrast, can often be overlooked at this time. Yet caring for a person with dementia is a highly stressful and complex job, and often being a carer is a position they find themselves in rather than one they have chosen to be in. People often receive no training or support to do this role and as well as worrying about the person with the diagnosis, carers often find themselves struggling with complex and challenging emotions such as guilt, anger and resentment. Carers of people with dementia experience higher levels of stress and are more likely to experience depression and anxiety than carers of other older 47 people.

In addition, the amount of support a person with dementia needs is likely to be greater than the needs another older person may experience. Carers of those with dementia are therefore more likely to need to reduce hours or give up work in order to support their loved one and are more likely to struggle with money as a consequence. They are also less likely to focus on their own health and well-being and can experience higher incidences of ill-health than their counterparts who are not carers.

Carers of people with dementia must find a way to prioritise their own health and well-being and actively seek support for their caring role. This might be informal support from friends and family or formal input from health and social care professionals. In a stressful and complicated caring role, you may feel that looking after yourself is a luxury that you cannot afford but in fact the opposite is true. Caring for yourself, having your own time and space and looking after your own health and finances makes you far more able to care for your friend or relative and avoid carer burnout.

Learning about dementia This sounds obvious, but lots of carers of people with dementia report that they have never received adequate information from health and social care professionals about the care needs of a person with dementia and the best way to support them.

Understanding an illness is the first step to understanding the best ways to help a person.

Understanding the individual with the diagnosis is also crucial because everybody who has dementia experiences it in a way that is unique to them. It may also be useful to think about your relationship with the person prior to their diagnosis and acknowledge and recognise whether that dynamic has changed now. For example, if you are caring for a parent with dementia, the element of “role-reversal� in your current dynamic might introduce tension into certain situations. If you are aware of this, you can manage your own emotions better and handle the feelings of the parent with dementia in a sensitive way.

Many websites and organisations offer support and advice to carers of people with dementia and some have discussion areas online where carers can anonymously discuss difficulties and ask questions from other people in the same position. This peer support can make carers feel less alone and having information about the dementia journey and symptoms people can experience can help carers feel that the behaviour of their loved one is caused by changes in their brain instead of being personally directed at them. This is particularly important if you are caring for a spouse or relative.

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Key resources include; • Unforgettable • Alzheimer’s Society • Carers Trust • Dementia UK • Age UK You may also be able to get further support and information from your GP, the memory clinic that diagnosed the person you care for and social services.

Building a support network Friends and family: Having people around you that you can talk to is a really important way of preventing the social isolation that some carers experience. If you have a close friend that you can talk to, allow them to support you by telling them about your caring responsibilities and the feelings that you may be experiencing. If you have family members around, let them know what you are doing and how you are feeling. They may be able to share some of the caring responsibilities with you so that the pressure is not all on you.

Peer support: Even if you have close friends and family, there may be some parts of the caring experience that you feel uncomfortable sharing with them. You may feel angry or frustrated with the person you care for at times and this can cause feelings of guilt and self-recrimination.

You may worry that someone who has not experienced how it feels to be a carer might not understand or might judge you for this. Meeting and sharing experiences with people who are also caring for friends or relatives is an important source of support for lots of carers.

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Most areas will have a carers centre associated with local social services that host regular meetings, activities and social events. If getting out to a physical meeting is difficult, most dementia support websites (see above) have active online communities that you can join and use 24 hours a day.

Talk to your GP: It’s important that you tell your GP that you are caring for somebody. They may be able to support you by referring you on to other teams and they are a place you can seek help if things become difficult. GPs can access counselling and psychological services that many carers of people with dementia find useful. Seeking emotional or psychological support in your caring role does not mean that you are not coping. Professionals working in this area can often teach you tools and strategies to help you cope in times of upset or stress which not only improves your health and well-being but also improves your ability to perform your caring role well.

Talk to social services: It’s also a good idea to involve social services when you start to care for a person with dementia. All carers are entitled to a care assessment in which the social worker assesses the practical, financial and emotional needs of a person providing care for a loved one or relative. They can refer you to support networks like carers centres and can ensure that you are receiving all the benefits that you are entitled to. They may also provide or refer you to advocacy services who can help with matters like Wills and power of attorney. Social services can assess whether any of their services will help you and the person you care for. For example, if it is uncomfortable for you to provide intimate care to a parent, they may be able to provide a carer who can do that part of the caring role. Social workers can also help find respite care placements for the person you care for which may enable you to take a break or go on holiday. They are often a key support in a crisis situation or when your needs or the needs of the person you care for changes.

Memory clinics: Most people with the symptoms of dementia will be diagnosed in a specialist memory clinic. Memory clinics are teams that consist of mental health doctors and nurses as well as social care professionals. If the person you care for was not diagnosed in a memory clinic, it may still be possible to be referred to the memory clinic if the person’s behaviour or mental health needs become difficult for you to manage. As well as having specialists to support the person with dementia in these circumstances, some memory clinics can offer support and advice to you as a loved one. Speak to your GP about what support may be available from your local memory clinic.

Other professionals: Depending on where you live, you may be able to access support from additional professionals including dementia advisers, admiral nurses and dementia support workers. Speak to a GP or social worker about what is available in your area.

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Be realistic about what you can do Dementia is a progressive, complex and incurable condition and even the best carer in the world will one day find themselves in a situation that they cannot cope with. Be kind to your limitations as a carer and be realistic about what you can and cannot control. Caring can pick up a momentum of its own that sweeps the person doing the caring along and before they know it, they are in a position that they feel trapped or overwhelmed in. At the earliest opportunity, it might be useful to make a list of what the maximum is that you can cope with.

For example, if you need to work in order to pay your bills and your mortgage, you make it clear from the outset that you can never let caring stop you from working. Although it is also useful to be flexible, it can be useful to have these boundaries clearly marked in your mind.

When a person is in the thick of a caring situation, they sometimes take on more and more out of a sense of duty or misplaced guilt and responsibility. It is good to know where your limits are because they will prompt you to ask for help if you find yourself in that situation. This is a practical and healthy psychological tool.

Be kind to yourself Health: If the person you care for felt unwell or distressed, you would seek help on their behalf.

But the evidence shows that carers of people with dementia aren’t as diligent in looking after their own needs and are therefore more likely to suffer from mental and physical ill-health. Visit your doctor, eat well, exercise and get enough sleep.

Social: It’s important to be around people and remember that there is a whole world out there.

Spending time with a mixture of people; those who know about your caring role and those who don’t can be a crucial element of support for you. Even if you don’t feel like spending time with people, it can be a breath of fresh air to just go to the cinema on your own or sit in a cafe and people watch.

Well-being: It’s important that you remember the tasks and the hobbies that make you feel relaxed and fulfilled. Having a long soak in the bath, reading a book or going out for a walk can help you de-stress and feel reconnected to yourself. Keeping time for yourself is not a luxury and is not frivolous; it is an essential coping strategy that you need to commit to. Coming away from the person you care for to do something for yourself may feel strange, so it might help you to think of this time as an investment in your longer-term ability to care. Being burned out and stressed may prevent you from being able to deliver the type of care that you want for the length of time that you want.

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CASE STUDY Pat loves her mum and has so much respect for how Maria struggled bringing up a large family in very difficult circumstances. Pat is the only sibling that lives close to Maria but she is happy to take a lead on caring for her. Pat doesn’t see herself as a “carer” though, she sees herself as a daughter helping her mum out when she needs it. However, the mother/ daughter dynamic can be complicated, especially when the dynamic starts to reverse.

As time passes, Maria needs more and more support from Pat. Eventually she starts wondering whether she should give up work to look after Maria full-time. Pat’s job is parttime and they don’t rely on the money, so her husband suggests she retires. Whilst Pat thinks this would be best for Maria, she has worked with her colleagues for 30 years and can’t imagine life without the routine of work.

Over the winter, Pat picks up a cold that she just can’t shake and eventually manages to get an appointment to see her GP. The GP asks Pat whether she feels stressed about anything and Pat says of course she isn’t. But when the GP probes a bit further, Pat finds herself crying and talking about her mother’s condition, her conflict over whether she should keep working and the guilt she feels about sometimes resenting her mum or finding her behaviour annoying or selfish. The GP asks whether she thinks of herself as a carer and Pat finally realises that she is. The GP makes a note that she cares for her mother and this allows the GP to keep an eye on how Pat is coping.

With Pat’s agreement, she refers her to a social worker who completes a carer’s assessment on Pat and finds that she is entitled to some benefits. The social worker also connects Pat to a carer’s support group where she meets lots of people going through exactly the same thing as her. Pat decides to keep working as the social element is important to her own well-being, and the carer group encourage her to speak to her siblings about how they can support Pat looking after Maria.

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Conclusion We hope you’ve found this guide useful and that it helps you to keep your loved one safe and well at home. However, it’s important to note that despite all your efforts, a hospital admission might still become necessary. Please don’t blame yourself if this happens. When a person with dementia becomes very unwell, the best place for them is hospital – and there’s plenty you can do to make their stay easier on them and you.

In our second eBook An Unforgettable Guide to…Going into hospital when you have dementia: What you need to know to have a stress-free hospital stay we’ll explain the best way to manage a hospital admission and what you’re entitled to (you might be surprised).

We’ll also give you some insider tips on how to get the best support for you and your loved one from admission to discharge.

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Tell us what you think We hope you found this book useful and that it makes a real difference. We set up Unforgettable to help people with dementia enjoy the best life possible. Help us be better! Give us your feedback on the things you read here. Things you found useful, that you particularly like or that you disagreed with.

Your ideas could help others!

Please tell us your stories, tips and experiences. We are building a community of carers so that they can also learn from each other. Share with us any ways that you have coped with the symptoms and illnesses in this book, any ways that you have avoided hospital admissions or products you have found that really helped. We will share these with our community so that other can benefit from them.

Get in touch We are always happy to help, recommend products and to hear feedback and ideas, so please do get in touch: Web www.unforgettable.org Email happytohelp@unforgettable.org Phone 020 3322 9070 @Unforget_org unforgettable.org

Some products and services that might help The dementia journey is full of challenges which can feel overwhelming at times. If you’re struggling right now, Unforgettable might be able to help. We have a wide range of products and services designed to make your life a little bit easier; from dealing with legal matters to finding practical ways to cope with incontinence or disrupted sleep. The next few pages offer a glimpse of what Unforgettable can do for you. Remember, you aren’t alone.

Best wishes,

The Unforgettable team.

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LPA

Why is an LPA important for us all?

It’s an unfortunate truth that any of us could lose our mental capacity at any time due to accident or illness. With one in three of the over-65s being diagnosed with dementia at some point, we wanted to help, as this area is often overlooked and misunderstood.

Without a Lasting Power of Attorney in place your family members will not be able to manage your financial or welfare needs, so it is critical to put one in place. Some would say it’s as critical as having a Will.

How can Unforgettable help?

Our services have been designed in collaboration with expert legal partners to help you through the process, offering you a simple and free questionnaire that completes your forms. Currently our service only covers England and Wales as there is a different process in Scotland and Northern Ireland.

Together we also provide a range of checking and drafting services to offer you peace of mind before registering with the Office of the Public Guardian. We’ve even introduced a dementia specific statement of wishes which helps address some important questions that aren’t covered by the standard form.

You can find our more about these services on the following pages, by visiting our website, or by calling us on 0203 322 9388.

Need more advice? Visit our website and sign up for our free eBook.

Everything you need to know. We’ve done the hard work for you. Our free guide cuts through the legal jargon with helpful information and advice on:

• • • • •

Why get a Lasting Power of Attorney?

How to fill out and register forms How to pick your attorneys How to use a Lasting Power of Attorney What is mental capacity?

856 4469 Quotewww.unforgettable.org/lastingpowerofattorney or enter CATALOGUE10 on your first order over £50 and0203 receive 10% off.

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LPA

Why choose the Unforgettable LPA service?

1. Free online service with great value support packages No need to use expensive lawyers, our online service is free and for reassurance you can upgrade with our checking and drafting packages.

2. Faster, easier and secure Simply answer our online questionnaire to automatically complete your forms.

3. Peace of mind checking service from only £89 Don’t be one of 10% of registrations rejected by the Office of the Public Guardian every day. We can double check your forms.

4. Complete your LPA’s over the phone from only £180 If you prefer not to do everything yourself, our experts can do it for you over the phone.

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5. Our services are Dementia friendly with specific consideration for challenges relating to dementia and memory loss.

6. Get extra protection with Mental Capacity Certification If you are concerned that mental capacity is in question our experts can visit you at home to provide, if appropriate, official mental capacity certification.

7. Remember you don’t need to be diagnosed with dementia to use our service.

It is open to anyone who wants to plan ahead for illness or accidents which can affect mental capacity.

8. Designed by Unforgettable and delivered by experts, Brook Worthy Law and Net Lawman.

www.unforgettable.org/lastingpowerofattorney 0203 4469 Shop online at www.unforgettable.org or call our Order Line on856 0203 322 9388

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Some helpful product suggestions from Unforgettable for incontinence and UTIs

Incontinence alarms will alert you as soon as the bed is wet so you can respond quickly

Incontinence swimwear and pants means you can still do your favourite hobbies without having to worry about an accident www.unforgettable.org/shop

Pixie Pants is a discrete sensor which goes inside a pad and can detect risks of UTI

Bright coloured toilet seats and supports can make the toilet easier to see and get on and off

Furniture pads clean up kits can minimise mess 020 3322 9070

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Some helpful product suggestions from Unforgettable for active days and restful night

Unforgettable 2-in1 Calendar and Day Clock helps with daily routine and determining day and night

Dementia puzzles and painting sheets are a great way to stay active and engaged

Simple music players and TV remotes help people to do the things they enjoy with independence. Music is also a great therapy!

Sensory products offer stimulation to help to soothe and occupy fidgeting hands

Soothing lights and sounds can help calm and relaxing into sleep

www.unforgettable.org/shop

020 3322 9070

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Some helpful product suggestions from Unforgettable for safety in the home

Personal alarm and GPS tracker means you can alert your family and friends if you need help. It also has a fall detector and tracker

Specialist lighting will pick up on motion, and light the way for you when you get up at night

Specially designed bed jackets keep you warm and are easy to get on and off www.unforgettable.org/shop

Non-slip socks can help to minimise falls

Grab rails can suction on to walls and provide a handle to help stay steady on your feet 020 3322 9070

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Some helpful product suggestions from Unforgettable for eating, drinking and managing medication and pain

One way straws are helpful is if a person has weak suck reflex and struggles to take in fluids

Brightly coloured and non-slip eating sets can increase intake of food and drink

Unbreakable glassware looks elegant and is made of indestructible plastic so can’t break

Images can be a great way to communicate pain and emotions when speaking is a barrier

Automatic pill dispenser reminds you to take the right dose at the right time

www.unforgettable.org/shop

020 3322 9070

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Other helpful guides from Unforgettable Everything you need to know about caring for a loved one •

Contains tips for every day struggles

•

Practical advice to help them live better

•

Support for anyone who cares for someone with dementia

If you're caring for a loved one with dementia, this guide is for you. It offers ideas from people who've been there too and ways to cope with every aspect of daily life. We know you're doing a great job, under very difficult circumstances, so let us help you.

Go to www.Unforgettable.org/E-Books

Introducing our new range of helpful eBooks.

Visit www.unforgettable.org/E-Books for more information Other titles coming soon.

•

Dementia Explained

•

The Unforgettable Gift Guide

•

A Guide to the Dementia Journey

Sign up to our newsletter to be notified about these exciting new releases and receive a free chapter from Dementia Explained!

Shop online at www.unforgettable.org/E-Books or call our Order Line on 0203 856 4469

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