Did you know carers and people living with dementia tended to report higher levels of loneliness than the general population? Do you know 43% of caregivers of dementia stopped inviting friends over due to concerns about how they might treat their loved one? Are you also aware that nearly 1.6 million Australians are involved in the care of someone living with dementia?
(For family, friends and carers | Dementia Australia)
(https://www.alzint.org/resource/world-alzheimer-report-2024)
Hi, Dr Dennis. Again, thank you for this opportunity to share with you my personal of witnessing the traumatic experience my family and relatives went through in caring for my late grandmother and my clinical experience in dealing with my clients and their carers.
Definition of Carer
Back home, a carer is someone who provides unpaid care and support to family members and/or friends with a disability, mental illness, chronic health issue, or an older person with care needs.” In 2023, there were at least 140,900 unpaid carers of people with dementia who lived in the community.
The table on the following page
highlights the areas of carers’
choice of looking after their loved one.
One additional fact back home in Australia:
“Around 53% of primary carers of people with dementia (and 71% of primary carers of people without dementia) were of working age in 2018. Primary carers of people with dementia were more likely to be unemployed or not in the labour force (75%) than primary carers of people without dementia (59%).” Dementia in Australia, Employment and financial impact on carers – Australian Institute of Health and Welfare (aihw.gov.au)
| Stopped yourself from inviting friends or family over to your home because of worrying about how they might treat the person you care for who has dementia | 43 | 40 | 51 |
| Stopped yourself from accepting invitations to visit friends or family because of worrying about how they might react to the person you care for who has dementia | 47 | 47 | 46 |
| Avoided joining or participating in social groups or activities (such as clubs, hobbies, or volunteering) because of worrying about how the group members or organisers might deal with or react to the person you care for who has dementia | 42 | 37 | 38 |
| Avoided going out in public places (such as parks, malls, or cinemas) with the person you care for who has dementia because of worrying about how the public might perceive the person you care for | 35 | 29 | 42 |
| Avoided travelling or taking vacations with the person you care for with dementia because of how staff or other travellers might treat them | 43 | 36 | 43 |
(The World Alzheimer Report 2024, page41)
What is the main take-home message?
Back to my story, my late grandmother, whom we call Mama, was diagnosed and later succumbed to Alzheimer’s (the most common degenerative disease-causing Dementia) for over a decade in Malaysia. I witnessed the progressive and agonising deterioration in her mental state and physical state. I often described the progressive nature of Alzheimer’s as “stages of a normal infant growing up in reverse”. Yes, my mama eventually lost her ability to swallow, walk and talk. She needs two full-time maids to look after her to prevent bed sores and feed her through the nasogastric tube inserted through her nose, which she would rather not have from her body language. I hope you can imagine the situation; to further describe the final few months of her life will be too graphic…. But what I also want to highlight here is the “collateral damage” of her condition on her children, my mother included. This is made worse by geographical separation. I remember vividly when my mama suffered repeated intracranial bleeding and seizures, I, being a doctor and the eldest grandchild, flew back home and conducted a family meeting to plan for palliative care and to prepare my relatives for the worst. It was heartbreaking to see their anguish and disappointment as there is “nothing we can do about Alzheimer’s” I heard my uncle utter in tears and anger; yes, I replied, “We can only keep her comfortable.”
Fast forward ten years, there is emerging evidence that Alzheimer’s is preventable and, in some cases, reversible! Friends, stay tuned; I will outline this exciting development with you.
Watch this Short Video:
What is the main take-home message?
The main message here is that stigmatism against the carers and the people living with Dementia is honest, concealed or open. Society and the world have a long way to go when treating people and their carers. It takes courage to confront this disease, and it must start with understanding what this disease is all about.
Everyone, from leaders, politicians, media, business entrepreneurs, Scientists, and medical professionals, must take ownership of this global disease. The least we can do is stop spreading misinformation about Dementia as a normal part of ageing and, for all of us, stop believing that we are losing the battle to Dementia. Hope is on the horizon!