Dementia can spark fear when you can't even remember loved ones you live with

Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation.
Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation.

The thought of having our memories erased and being unable to recognise the people we cherish would elicit fear in most individuals. For adults with a dementia diagnosis, this fear is magnified ­– even more so for those closest to them.

Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation. The month of September is dedicated to raising awareness, and  September 21 commemorates World Alzheimer’s Day. This year, its theme is “Let’s talk about it”.

Nothing can prepare an individual or family for the impact of dementia. Although each person is unique, most families share the common sentiment that it is a heartbreaking experience, as one essentially grieves the loss of a loved one even while they are alive.

About 50 million people are living with dementia worldwide. A global prevalence is forecast to reach 75 million by 2030 and 131.5 million by 2050. About 66% of sufferers reside in low- and middle-income countries.

Dementia is the general label given to a cluster of irreversible changes in memory, communication, reasoning, executive functioning and attention. A key risk factor is age; for this reason, there is a widely misinformed view that dementia is an inevitable outcome of old age. This, however, is not the case.

Dementia is the result of distinctive pathologies that affect different parts of the brain. A wide range of symptoms profile dementia into several subtypes, for example, vascular dementia arising from stroke or heart disease). The most common form is being Alzheimer’s dementia.

It’s important to consider the misconceptions and stigma associated with a dementia diagnosis. Because it is a degenerative condition, one misconception is that very little can be done to improve the quality of life of those who suffer from it. This narrative paints a bleak future, and is one that must be challenged.

Difficulties in communication, an integral part of the human experience, persist across all dementia subtypes. Sufferers typically experience difficulty in understanding language or finding the right word when describing events, retelling stories or sharing jokes. They might also repeat questions already answered or confuse people’s names.

Over time, with a loss of language, they are likely to withdraw from interpersonal interaction altogether. This can be distressing to spouses, children or grandchildren as they might be unaware of how to provide appropriate support. Ultimately, these challenges could create a social and emotional divide; this puts a strain on family relationships.

There are various strategies family members can employ:

  • Gain the attention of the person by using their name to address them. This not only shows respect 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. This can provide everyone with an enjoyable activity through which to connect
  • Offer the person choices to promote their independence in daily decision-making.

From a human rights perspective, people with dementia have a right to participate in decisions and have their voices heard. Many often feel 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, leading the charge in advocating for the autonomy and independence of people with dementia to express their opinions in matters that affect their lives.

Augmentative and alternative communication (AAC) can be vital in important conversations by using pictures to understand information and express personal preferences. Families can use simple, paper-based books with photographs as a form of AAC. Digital family photographs on an electronic device can also be used to share stories and take a trip down memory lane.

Caring for a family member with dementia can pose significant emotional and caregiving challenges. There are, however, services that offer support and assistance. Dementia SA and Alzheimer’s SA are two non-profit organisations that offer workshops, training and advice. These services are available in several SA languages and across all provinces.

By increasing the conversation around dementia, we are creating opportunities to confront prevailing stigmas. In doing so, we hope the negative narrative associated with dementia can change.

May is a PhD candidate and professor Dada is with the Centre for Augmentative and Alternative Communication at the University of Pretoria

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