‘I do believe it will become an epidemic’
Even though the signs were there, Ria Outerbridge was surprised to learn her mother had dementia.
Then in her early seventies, Cecille York was a retired educator who drove, shopped for groceries, took care of household chores and spent a lot of her time helping others.
That she kept losing her wallet was the only clue that there was anything amiss with her health.
Action on Alzheimer’s & Dementia and Alzheimer’s Disease International predict an estimated 3,000 people now living with dementia in Bermuda will increase 200 per cent by 2050.
Concerned by the lack of a national dementia plan they launched a campaign, #WhatsYourPlan, to push the Government into action.
The group is also worried by the financial burden the disease places on families as, under the standard health benefit, insurance coverage for dementia does not exist.
AAD and ADI believe that with a national plan in place, 40 per cent of the 9,000 cases that are anticipated “could be delayed or potentially avoided altogether”.
“What we really need is a focused, centralised place within the health ministry that tackles dementia and the care that is needed for dementia – financial, educational and caregiving support. That's what I would like to see,” said Ms Outerbridge.
“This can be such a long disease that it wears on the pocket of the family. Especially if their loved one has limited financial means, it really can get stressful trying to get the financial support. Yes, there's financial assistance, but not everyone meets that criteria.”
The term dementia covers a range of specific medical conditions caused by damage to brain cells.
A progressive disease, its impact is so severe that it interferes with daily life.
There are many different types of dementia, Alzheimer’s is the most common.
Cardiovascular health, diabetes, family history and older age are among the many risk factors.
Having seen the evolution of the disease through her mother, Ms Outerbridge is concerned that the island is ill-prepared for the “epidemic” that is to come.
Ten years ago, her family had no choice but to stumble through fragmented options to find a health solution for Ms York, who is now 82.
Aside from constantly losing her wallet she complained of having the sensation of “worms crawling around in her head”.
“We just couldn't understand,” her daughter said.
The first GP they saw put Ms York on medication, none of which worked.
A second suggested she go to the Mood and Memory Clinic at King Edward VII Memorial Hospital.
“At that time I was like, ‘I don’t think mum has any real problems.’ But nonetheless, she went in and the diagnosis of moderate dementia was made,” Ms Outerbridge said.
The geriatrician was shocked to learn that Ms York drove herself to the appointment; her family was shocked by a diagnosis they never saw coming.
“She was driving and grocery shopping and doing all the things that she was doing for the household,” said Ms Outerbridge, who had accompanied her mother to the appointment.
“I just thought maybe she was stressed – because she did have a lot going on at the time – and it was contributing to her losing things.”
Ms York was well respected in the community for her work as an educator in the public school system, and had a “vibrant” personality.
Ms Outerbridge, a trained nurse, understood that change would likely soon come.
“I knew what it could possibly mean for her to be diagnosed with Alzheimer's dementia,” she said.
It took about two years before Ms York couldn’t be trusted to stay at home alone.
At the recommendation of her GP, the family had already sought help from local charity Action on Alzheimer’s and Dementia.
It is how Ms Outerbridge connected with Marie Fay, an occupational therapist who has since founded NorthStar Dementia.
“At that time NorthStar dementia didn't exist but Marie was working actively with Action on Alzheimer's and she came to our house and did an assessment and it was just so thorough,” she said. “I started to feel: ‘OK, we can take it on. We have some support.’
“But I found that as mum's needs increased, that's when the stress of trying to find a caregiver began. Everything was so fragmented and there was only so much that Action on Alzheimer’s could do.
“The support groups, they were phenomenal: the daycare, the activities, they were great but what we were really needing after a while was just a coordinated plan for mum.”
Although Ms York had “good health insurance” the family found it necessary to put her on FutureCare as it offered financial help for caregiving.
“There was so much need and only so much that Action on Alzheimer's could do,” Ms Outerbridge said. “I have found it very frustrating.”
What would help, she believes, is if dementia care were prioritised and dementia screening became a part of annual physicals for people over the age of 65.
“[Ageing and Disability Services] do a great job, but maybe there should be a sub department that deals with persons who have dementia. I just think it needs to be a focus because of the numbers that are to come in,” she said.
“But for me, the biggest part is the financial support and the caregiving support.
“We do have a list of caregivers [within the Ministry of Social Development and Seniors], but that list is not up to date and you don't know who to really select from that list.”
There are many home health agencies on the island. Ms Outerbridge thinks they are “a better place to start”.
“But I found, in just trying to get the care and help, [what was there] was very fragmented.
“There definitely needs to be more health professionals dedicated to assisting persons and families and caregivers of persons who have dementia, because I do believe it will become an epidemic.”
• In 2017 the World Health Organisation adopted aglobal health planon dementia and encouraged countries to get on board by 2025. For information on Action On Alzheimer’s & Dementia, visitaad.bm. Learn more about NorthStar Dementia atnorthstardementia.bm