Forgotten dreams

BY VIVIAN WARBY vivian.warby@inl.co.za

A diagnosis of dementia can put paid to retirement dreams and could entirely change where you end up spending the last years of your life

“WATCHING my father slowly deteriorate and being unable to make decisions for himself, was one of the most terrifying aspects of his dementia diagnosis,” says Capetonians Jean de Beer.

His father’s fate was left in his hands and De Beer found it difficult making decisions that affected everything about his father’s life. Having diminished mental capacity meant De Beer’s dad was unable to make informed decisions relating to his medical treatment, where he would live and the care he would receive.

For anyone, this is a frightening prospect because it could lead to prolonged pain, discomfort and suffering if your caregivers don’t make the best decisions for you.

Experts advise that by proactively addressing the matters while still capable of understanding the implications, you can exert greater influence over your future plans.

In fact, they say, your olderage plan should include some commentary on the possibility you may get dementia.

WHERE DO YOU BEGIN?

Discuss your wishes: Have an open conversation with your partner and family members regarding the decisions around your life and care should you be affected by dementia. By fostering clear communication, you can ensure your family is wellinformed and equipped to make the necessary arrangements on your behalf. Families sometimes don’t want to broach the subject, so you could also write all your wishes down and email it to them.

Select a trusted representative: When it comes to legal and financial matters, do appoint a trusted person to act on your behalf. Consider selecting a second person should the first not be available when the time comes. While a power of attorney might be enough in the early stages of dementia, it becomes invalid once cognitive function deteriorates further. You could also discuss with a legal or financial adviser a plan for the possibility of legal curatorship and identify the most suitable individual/s for the role.

Draft a living will, also known as an advance health directive, where your wishes for future medical treatment can be expressed and you can appoint a medical proxy.

Giving the role to an implicitly trusted individual guarantees endof-life care choices are honoured if you can no longer communicate them personally. Updating your will is also of paramount importance in the comprehensive planning process.

HOME CARE: Begin with what home care would look like for you and what it would entail.

Daily assistance with cooking, dressing, bathing, and personal and financial needs, as well as home safety measures and medication management, might become necessary. This might initially seem overwhelming. However, many people are well cared for at home by dedicated carers (often family members) in the beginning or even later stages of the disease.

Also have a plan for any pets should you no longer be able to care for them.

VISIT CARE FACILITIES:

It is important that part of your pre-planning leads you to explore various care facilities to assess the options available should you ever need to go in that direction.

ASK THESE QUESTIONS: Do they have:

✦ Dementia care centres?

✦ Frail care?

✦ Occupational therapy, including music therapy?

✦ Do they allow pets?

✦ Enough carers to residents? (Too few carers could mean you miss out on proper care.)

✦ Personalised accommodation?

✦ Trained health-care staff who understand the unique needs of dementia patients?

✦ Safe, secure and comfortable accommodation?

CHECK IF:

✦ Residents are well taken care of. Do they have the freedom to walk around and enjoy the outdoors accompanied by carers, for instance?

✦ They involve loved ones in decision-making processes and keep them informed about daily life.

✦ They know the latest global dementia-care trends and implement them.

✦ Your family are kept abreast of any changes, in management for instance, because things do change at care facilities.

Some retirees decide to buy into developments that have these care facilities attached so that there is not much upheaval.

WHEN talking about dementia, it’s important to consider the misconceptions and stigma associated with such a diagnosis. One misconception is that little can be done to improve the quality of life of those who suffer from it because it is a degenerative condition. The narrative paints a bleak future for people with dementia and is one that must be challenged.

Communication is an integral part of the human experience as it creates possibilities to develop social connections with others. Communication difficulties persist across all dementia subtypes.

Over time, with a loss of language, those with the condition are likely to withdraw from interpersonal interaction altogether.

The communication difficulties can be distressing to spouses, children or grandchildren as they might be unaware of how to provide appropriate support when interacting with their loved one.

Ultimately, the challenges could create a social and emotional divide between those with dementia and their family; this puts a strain on family relationships. There are various strategies that family members can employ during a conversation to support someone with dementia:

✦ Gain the attention of the person by using their name to address them. This not only shows respect for them but also upholds their self-identity and personhood.

✦ Use multiple forms of communication (spoken language with facial expressions) to enhance the meaning of what is being expressed.

✦ Avoid completing their sentences – rather stop and wait. This will allow them time to process information and to respond at their own pace.

✦ Incorporate familiar music and songs into conversations. Music is one area that is often well preserved in people with dementia. This can provide everyone involved with an enjoyable activity through which to connect.

✦ Offer the person choices to promote their independence in daily decisionmaking. The implementation of augmentative and alternative communication can be vital in facilitating important decision-making conversations by using pictures to support the understanding of information and expression of personal preferences.

Innovative interventions that employ artificial intelligence to support communication are also being developed.

DEMENTIA South Africa (www.dementiasa. org) and Alzheimer’s South Africa (https:// alzheimers.org.za) are two examples of nonprofit organisations that offer workshops, training, advice and support to families and caregivers. The services are available in several South African languages and are accessible across all provinces.

From a human rights perspective, people with dementia have a right to participate in decisions and have their voices heard. Many often feel that their opinions aren’t taken seriously or their views are ignored, even within their own homes. There are various advocacy organisations, such as Dementia Alliance International (www. dementiaallianceinternational.org), that are leading the charge in advocating for the autonomy and independence of people with dementia to express their opinions in matters that affect their lives. University of Pretoria

Communication is key

BY ADELE MAY AND SHAKILA DADA

WHEN talking about dementia, it’s important to consider the misconceptions and stigma associated with such a diagnosis. One misconception is that little can be done to improve the quality of life of those who suffer from it because it is a degenerative condition. The narrative paints a bleak future for people with dementia and is one that must be challenged.

Communication is an integral part of the human experience as it creates possibilities to develop social connections with others. Communication difficulties persist across all dementia subtypes.

Over time, with a loss of language, those with the condition are likely to withdraw from interpersonal interaction altogether.

The communication difficulties can be distressing to spouses, children or grandchildren as they might be unaware of how to provide appropriate support when interacting with their loved one.

Ultimately, the challenges could create a social and emotional divide between those with dementia and their family; this puts a strain on family relationships. There are various strategies that family members can employ during a conversation to support someone with dementia:

✦ Gain the attention of the person by using their name to address them. This not only shows respect for them but also upholds their self-identity and personhood.

✦ Use multiple forms of communication (spoken language with facial expressions) to enhance the meaning of what is being expressed.

✦ Avoid completing their sentences – rather stop and wait. This will allow them time to process information and to respond at their own pace.

✦ Incorporate familiar music and songs into conversations. Music is one area that is often well preserved in people with dementia. This can provide everyone involved with an enjoyable activity through which to connect.

✦ Offer the person choices to promote their independence in daily decisionmaking. The implementation of augmentative and alternative communication can be vital in facilitating important decision-making conversations by using pictures to support the understanding of information and expression of personal preferences.

Innovative interventions that employ artificial intelligence to support communication are also being developed.

Excerpts from a piece by Adele May, PhD at the University of Pretoria, and Professor Shakila Dada of the Centre for Augmentative and Alternative Communication at UP.