by Annabel Cooper
The terms Alzheimer’s and dementia are often used interchangeably, but Alzheimer’s disease is actually one of many forms of dementia, an umbrella term used when loss of memory, language, judgement, concentration, problem-solving and other thinking abilities are severe enough to disrupt your daily life.
Between 60 – 80 percent of all dementia cases are Alzheimer’s disease. Other common forms include vascular, lewy body and frontotemporal dementia.
Marie Fay is an occupational therapist specialised in dementia care, who was inspired to open her own practice, NorthStar Dementia, in January of this year, after seeing “a lot more people in crisis” during the Covid-19 pandemic.
“When Covid hit, it highlighted how big a need there was in the community, especially when some of the government organisations weren’t able to go out as readily and some of the day programming options weren’t running,” she explained.
Most forms of dementia are diagnosed after the age of 65, hence it is associated with the more senior members of our population who were told to stay at home during the pandemic. Lack of social interaction is particularly damaging for dementia sufferers.
While dementia is a progressive condition with no cure, Ms Fay emphasised that she has “a lot of clients” still able to enjoy life in spite of their diagnosis.
“They are maintaining a good quality of life, living alone, still driving, still undertaking voluntary roles, who are really being proactive in trying to maintain their health over time,” she said.
“It’s just a matter of facing the condition head on. Getting educated about what it is and how it presents. Making sure that we’re planning ahead so we get the necessary legal and financial affairs sorted and ensuring that we have the appropriate care and support services in place. With those, I see clients continue to do quite well over a prolonged period of time.”
Once diagnosed, there is also medication available that can, she said, “help to delay the progression of the condition and help with the management of some of the more challenging symptoms.”
Where Bermuda falls short however is in community-based care and support services.
“That’s a big gap for Bermuda,” continued Ms Fay. “In other jurisdictions, if you were to receive a diagnosis, you would automatically get linked in with a local community-based team that would involve things like day programming options, respite care, education, and support groups for family caregivers as well. We don’t have those resources in place yet.”
She would also like to see local insurers increase the amount of coverage available for therapies with a proven track record of helping dementia sufferers.
“Medication is often covered without question,” she said, “but some of the non-pharmacological therapy like occupational therapy, cognitive stimulation therapy, art therapy, music therapy, all those things that we know have been proven to be very beneficial to people with progressing dementia, are not as well covered.”
She also believes dementia-screening from the age of 65 should become the norm, in the same way it has for certain cancers.
“The ideal would be for people to be screened regularly from age 65 and for those issues to be caught early so we can provide more timely intervention and support,” she said. “Based on my experience, we see people in the moderate to later stages and that is not the ideal. The majority of cases are friends and family noticing issues, or things have escalated to a point where somebody’s clearly not managing their activities of daily living and that’s what pushes an assessment by the doctor and a subsequent diagnosis.”
Current screening practices are GP-dependent with some offering in-clinic screening as part of an annual physical, but it’s not standard that somebody would be assessed for dementia. You can, however, ask for it.
If the GP is concerned, patients can then be referred to the hospital’s Mood and Memory clinic or Bermuda Alzheimer & Memory Services (BEAMS) for more in-depth cognitive screening.
Ms Fay currently runs a cognitive stimulation therapy programme, which is designed for individuals in the milder to moderate stages of the condition. This is not covered by insurance, but for this year, is being funded by a grant from the Action on Alzheimer’s and Dementia (AAD) charity.
AAD also run a variety of daily activities and support groups for dementia sufferers and their caregivers, free of charge, but they are not drop off programmes. Caregivers have to stay, and herein lies another challenge – respite care.
“The burden of care falls to families,” she said. “We are expecting people to provide 24/7 care 365 days a year, with very little financial support or government-led services, and it’s taking a toll. People are missing out on work because they are being expected to provide care at home and a lot of them have their own lives, their own families that they need to take care of.”
Unfortunately, respite beds, which could give families the occasional break, are hard to come by in Bermuda.
Ms Fay is hopeful that the government will prioritise dementia care in the forthcoming health reform and said it’s important to develop a national dementia strategy and clinical care pathway.
“This is not a problem that’s going away any time soon,” she emphasised. “We expect to see the numbers go up dramatically along with the ageing population.”
The situation for dementia sufferers and their loved ones has improved since the dark days of 2020 and 2021, with day programmes back up and running and residential care facilities bringing external facilitators back in to do activities, but there is so much more Bermuda could be doing to support them.
“Bermuda has a unique opportunity to be a dementia friendly community,” she said. “This is not just about the individual experiencing symptoms of dementia. This is much more far reaching. It impacts people they’re living with, their extended family, their neighbourhood even, because if somebody is in the advanced stages they may start to wander. It takes a village.”