By Vicki Abraham
Elizabeth Stewart’s mother was 67 when she was diagnosed with Alzheimer’s and she had nowhere to turn for information or support. She was given no information about how to find a caregiver; what’s covered by insurance; advice on medications and medical check-ups; and many other questions that flooded her mind as she came to terms with her mother’s diagnosis.
She said she felt a sense of isolation. “Back then you literally left the doctor’s office with a diagnosis and no advice or follow-up. There was nowhere to turn.
“Mom seemed so young to have this condition and I needed to find ways to help her. We also didn’t know what to do, or who to turn to, as her condition progressed.”
To spare other families from the stress and worry of no information or support, Liz founded Action on Alzheimer’s & Dementia (AAD) Bermuda in 2012. The charity organised a three-day dementia care-training workshop for Bermuda’s health care workers facilitated by trainers from Dementia UK. It was an approach that would help as many people as possible and the workshop – that trained more than 100 healthcare workers – was oversubscribed -showing strong interest and a wide knowledge gap.
Ms. Stewart is still grateful for the support she received from XL for hosting that first workshop that launched the work of the charity.
Nine years on, the organisation provides ongoing services for people with Alzheimer’s and Dementia, such as group activity sessions at church halls, music, arts and crafts, movement classes, and chair yoga.
Ms Stewart said, “We also take these activities into care homes because there is otherwise a real lack of engagement for residents in care homes, unless they are in large enough homes to have an activities coordinator. Most residents have nothing to do all day except sit in a chair – which is not very stimulating.”
Due to the pandemic, the activities are now online which has extended the reach of the programmes. Ms Stewart said, “We do activity sessions over Zoom now. If you’re on our mailing list, we send out the zoom details for anyone who wants to join by computer or iPad right from your home. The care homes can call in as well, for their residents.
“The activities are really important. It keeps people moving and active, it gives them something to do and enjoy, along with a sense of purpose.”
AAD also runs a support group meeting once a month for families of people with Alzheimer’s and Dementia. It’s a safe place for family members to ask questions and share stories.
AAD encourages people to ask more about their diagnosis from their GP and to find out the cause of their Dementia. Is it Alzheimer’s diseases, vascular dementia, or some other form of dementia? There can be different treatment plans for different diagnoses.
Marie Fay, Bermuda’s Occupational Therapist specialising in Dementia care, works with AAD. She provides free home assessments, occupational therapy, and weekly activity groups for those living with Dementia.
Ms Stewart said, “It’s wonderful for the family to get a good, impartial picture of what’s happening with their loved one, especially if they don’t yet see the signs. You may think someone is fine but when an OT spends half a day with them and can report on how well they did, how self-sufficient they are, or not, and whether they are caring for themselves safely, these are things that the family doesn’t always see. Maybe they left the stove on – or they caught the bus and got off at the wrong stop – or they almost left their wallet somewhere – or were overly generous with their money.”
“Seeing these early signs can help families plan ahead. We often see people at the point of crisis, when the condition becomes unmanageable and they need a caregiver in a hurry. It’s always better for the patient and the family when we start thinking and planning early in the process”, she said.
Action on Alzheimer’s & Dementia maintains a large list of interested parties and sends monthly newsletters with information and articles to support them. They also share the latest information from Alzheimer’s Disease International with access to their online educational calls.
Ms Stewart said, “We help people with any questions they have. We’ve helped find caregivers before, we’ve helped navigate the government system of financial assistance, ageing and disabilities and we’re filling a hole of what’s not available through the Government. We’ve been the social worker in some cases, the liaison between families and insurance companies, and more.”
“We really encourage people over 60 to plan for their future now. We generally don’t like to think about ‘What happens when I die or if I become incapacitated’ – nobody wants to think about these things, but we really should.”
More information and contact details for Action on Alzheimer’s & Dementia (AAD) can be found online at: www. Alzbermuda.com