Dementia is the collective name for conditions in which progressive degeneration of the brain affects memory, thinking, behaviour and emotion. There are many different types and causes of dementia, including: Lewy body dementia, Frontotemporal dementia, Vascular dementia, Parkinson’s disease dementia, Creutzfeldt-Jakob disease, Huntington’s disease, Mixed dementia, and Alzheimer’s disease (the most well-known and common form of dementia).
Symptoms of Alzheimer’s include:
- loss of memory
- difficulty in finding the right words or understanding what people are saying
- difficulty in performing previously routine tasks
- personality and mood changes
Alzheimer’s is not a normal part of the aging process. Up to 5% of people with the disease have early-onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s. It is a disease that does not discriminate by social, economic, or geographical boundaries. Being tested for any form of Dementia is a turbulent and stressful experience. Diagnosis may be difficult at first, if the disease has not progressed far enough and can manifest in different ways for people.
Few of us will escape the impact of Alzheimer’s Disease, whether we succumb to it ourselves or in caring for a loved one. Due to lack of awareness and understanding of the disease, stigma is a significant obstacle to well-being for those with dementia and their families. It may prevent people from seeking a medical diagnosis or even talking openly with others about their lived realities. Earlier diagnosis of Alzheimer’s disease can increase the chances of delayed progression of the disease due to better treatments, and opportunities for persons to prepare for the future. If you or a loved one has been diagnosed with Alzheimer’s it can be stressful and hard to accept. It is life-changing for both those who are diagnosed and those close to them. Joining a support group, learning more about the disease, participating in clinical trials, and spending quality time with family and friends are encouraged to help you accept and live the best quality of life for as long as possible. Although there is no cure, research on prevention, treatment and cure continues.
Alzheimer’s Awareness Day on the 21 September marks a month long campaign to raise awareness and challenge the stigma that surrounds dementia. Alzheimer’s disease is often called a family disease because the chronic stress of watching a loved one slowly decline affects everyone. Many family and friend connections are lost at the onset of progressive symptoms of the disease; lost by denial, unable to ‘see the person like this’, ‘wanting to remember him/her/them the way they were before’, or through frustration and anger. It is never too late to reach out to those diagnosed, and their caregivers, to find out how you can best support them. Get involved in the conversation, by reading up about the disease, joining an interest group to learn how you can support loved ones, correct sources of misinformation, stop stigma in its tracks by standing up for those pained by the disease, and most importantly, make the most of the valuable time that you have with the ones you care for.
Tia Walker, author of The Inspired Caregiver: Finding Joy While Caring For Those You Love, said it beautifully, “Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.” As with any disease, people need people, to support, love and comfort them and families, while they make sense of their experiences and lived realities.
For support, contact the Alzheimer’s South Africa national helpline on 0860 102 681.
Please feel free to contact the PsySSA office on 011-486-3322 for a referral for more intensive treatment with an HPCSA registered psychologist in the province and area in which you require require assistance.
Below are some useful links for further information.
1Executive Member, PsySSA
2Centre for Evidence Based Health Care, Faculty of Medicine and Health Sciences, Stellenbosch University
3SOMETHIN’K Research Group, Centre for Sociological Research, KU Leuven
4Director, Research Ambition PTY
5Co-founder, Hearts in Action NPC