Issue 133 clinically assisted nutrition and dementia

MALNUTRITION MATTERS

IN ASSOCIATION WITH THE BDA'S OPSG

CLINICALLY ASSISTED NUTRITION AND DEMENTIA

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The Association of UK Dietitians

Specialist Group

Kirsty Robinson Older People’s Dietitian, Bart’s Healthcare Trust, London

There are 850,000 people living with dementia in the UK today (1.3%) and this number is projected to exceed two million by 2050.1 There are also approximately 700,000 informal carers caring for their loved ones with dementia, a number also expected to rise to 1.7 million by 2050.1

Kirsty has worked as a specialist older people’s dietitian for the last three years within an acute hospital setting. She enjoys supporting and educating patients, relatives and staff on a holistic and practical approach to nutritional support. Kirsty is a committee member for the Older People’s Specialist Group (OPSG).

People who have dementia experience a number of stages in their condition, from early difficulties with complex tasks such as driving, to the terminal phase where people become immobile, experience incontinence, dysphagia and are dependent on others for all care. Malnutrition risk increases as dementia progresses.2-4 People who have dementia have been found to account for 10 times more admissions to hospitals when compared to age-matched controls.5 A recent meta-analysis found minimal evidence of successful dietary strategies for combating undernutrition for those who have dementia.6 An individualised patientcentred approach addressing people’s different needs appears to be the most beneficial way to manage the condition.6 Clinically assisted nutrition is usually deemed as administration of food and fluids via a nasogastric tube (a tube that is passed through the nose and into the stomach), or via a percutaneous endoscopic gastrostomy (PEG), where a feeding tube is inserted into the stomach and is accessed through a permanent incision in the abdominal wall. A Cochrane review of clinically assisted nutrition and dementia in 20097 and a recent systematic review in 20158 found no conclusive evidence that clinically assisted nutrition is effective in terms of: • prolonging survival • improving quality of life • leading to better nourishment • decreasing the risk of pressure sores

REFERENCES Please visit the Subscriber zone at NHDmag.com

Alzheimer’s International’s Nutrition and Dementia - a review of available research (2014) suggests that enteral nutrition

may be considered if ‘dysphagia in a patient with dementia is deemed to be transient, but should not generally be used for patients with advanced dementia who are disinclined to eat or have permanent dysphagia’.9 In 2015, the European Society of Parenteral and Enteral Nutrition (ESPEN) similarly recommended the use of enteral nutrition in patients with ‘mild or moderate dementia if malnutrition is predominantly the cause of a reversible condition and only for a limited time’.10 In the UK, clinically assisted nutrition and hydration is regarded in law as a medical treatment. The General Medical Council (GMC) guidance on treatment and care when reaching end of life recognises that some people see nutrition and hydration, whether oral or artificial, as part of basic human nurture which should almost always be provided. It, therefore, advises clinicians to listen to the views of patients and those close to them, especially regarding their cultural and religious views and beliefs.

MEDICAL DECISION MAKING

Doctors in the UK are guided in medical decision making by medical ethics, including the four key bioethical principles (Beauchamp and Childress, 1979): • Autonomy: respect for an individual’s right to determine what is done to them.

• Beneficence: a duty to do things that will help others.

• Nonmaleficence: a duty to not do things which will harm others. www.NHDmag.com April 2018 - Issue 133

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MALNUTRITION MATTERS Table 1: Factors that might influence the use of feeding tubes in advanced dementia Patient and family factors • Unawareness of or difficulty accepting the terminal prognosis of dementia.

• Unawareness of the lack of benefit and increased risk of harm with feeding tube use in advanced dementia.

• Perception of patient ‘starvation’ or ‘dehydration’ without artificial nutrition and hydration that might be influenced by cultural or religious beliefs.

• Extra time required to assist with oral feeding.

• Complicated social dynamics (e.g. viewing interventions as a representation of high-quality care).

• Lack of advance directives specifically addressing artificial nutrition and hydration (when people do not want artificial nutrition).

Clinician factors • Unawareness of the lack of benefit and increased risk of harm with feeding tube use in advanced dementia.

• Lack of familiarity with simple techniques to reduce thirst and hunger.

• Avoidance of difficult discussions or belief that the discussion will be held by a different clinician (e.g. family physician, geriatrician, interventional radiologist).

• Fear of litigation.

• Administrative and systemic factors.

• Extra time and staff needed to assist with oral feeding in patients who have advanced dementia.

Adapted from; Ying, I (2015). Artificial nutrition and hydration in advanced dementia. Vol 61: Canadian Family Physician, Le Médecin de famille canadien

Table 2: Things to consider when completing a detailed dietetic assessment for someone who has dementia and is referred for clinically assisted nutrition • The patients’ views (current or past) on nutrition - do they have an advance directive? What are their next of kin’s views on what the patient would want?

• The patient’s cultural or religious beliefs or values.

• Type of dementia - number of years since diagnosis.

• Number of hospital admissions the patient has had within the last 12 months and reasons for admissions.

• Cognitive assessment completed recently or in the past (MOCA, AMT).

• Social situation - does the patient live alone or with carers OD/ BD/ TDS/ QDS, or in a residential care or nursing home?

• Does the patient have dysphagia usually or currently?

• How good is their mobility usually and currently?

• What is their skin integrity usually and currently?

• Is the patient continent usually and currently?

• What do the patients food record chart and +/- diet history in 24 hours show?

• Estimate of current intake energy/ protein vs requirements - is it improving, decreasing, or consistently the same over the last five days?

• What are the current barriers to eating and drinking?

Usual eating at home over the last week and the last 12 months: • Likes/dislikes • Quantity of food eaten • Time of day preferred, or no preference • Level of assistance needed; none, verbal encouragement, ‘hand-over-hand’ support, or full assistance • Texture modified diet - Yes/No? If yes, what texture food and fluids?

• Nutritional supplements - Yes/No? If yes, type and quantity Anthropometry • Weight/ BMI • Weight history over the last 12 months if available • Mid upper arm circumference (MUAC)

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Each circumstance is individual to that person. A holistic person-centred approach to nutritional assessment and multidisciplinary team working is required.

• Justice: respect for an individual’s right to equitable treatment with others.

In England and Wales the Mental Capacity Act (2005) states that clinicians should assess capacity by ascertaining whether or not patients can understand and retain relevant information, weigh up the pros and cons and communicate decisions. Where patients do not have capacity to make a decision regarding treatment, clinicians must act in patients’ best interests ensuring that: 1 decisions concerning withdrawal of lifesustaining treatments are not motivated by a desire to bring about death; 2 consideration is given to a patient’s past and present wishes, beliefs and values that may influence such decision making - the presence of an Advanced Decision to Refuse Treatment can assist in this context; 3 consideration of views from individuals named by the patient as someone to be consulted in this respect, i.e. anyone with an interest in the patient’s welfare, anyone with a Lasting Power of Attorney for the patient and any deputy appointed by the court.

WHAT IS THE DIETITIAN’S ROLE?

As dietitians working in the acute setting, occasionally we receive referrals for clinically assisted nutrition and hydration for those who have ‘advanced dementia’. Quite often these referrals are for patients who do not

have advanced dementia - these patients have previously been living at home, alone with minimal support and have been managing their activities of daily living adequately. In this situation, a short-term, time-limited trial (typically for two weeks) of nasogastric feeding is sometimes agreed with the patient (if able to consent), medical staff and family members, with clear goals set such as ‘to return to eating and drinking post-acute chest infection’.

I view our role as dietitians working with older people as helping to ensure that a detailed nutritional assessment is completed taking into account a person’s nutritional and medical history over the preceding year.

In order to do this, the dietitian must speak with the person, family members, other healthcare professionals and/or care providers (residential or nursing care homes). Referral to other team members such as geriatric psychiatry, dementia specialist nurses, speech and language therapy (if dysphagia is present or suspected), can be useful too, if things are unclear. This information can help aid medical decision making and help to establish the potential goals of clinically assisted nutrition as a medical treatment.

CONCLUSION

Each circumstance is individual to that person.

A holistic person-centred approach to nutritional assessment and multidisciplinary team working is required.

Further reading Oral feeding difficulties and dilemmas; A guide to practical care, particularly towards the end of life (2010), Royal College of physicians End of life care: Clinically assisted nutrition and hydration (2012). GMC

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