'A big strain on the system': Spike in dementia diagnoses expected by 2030
N.L. advocates call for more home support as numbers are expected to go up by 43 per cent
Roseanne Leonard of Paradise, N.L., remembers the day her mother Elizabeth received her Alzheimer's diagnosis like it was yesterday. It was in late October 2011, and her mother was only 58.
"To get this diagnosis was really shocking to us and especially at such a young age," said Leonard.
The family decided to take care of Elizabeth at home, making husband Blair her primary caregiver.
"We rolled with that diagnosis with Mom as a family and we managed it and loved her and each other throughout it," said Leonard.
Alzheimer's disease is the most common form of dementia, making up 60 to 80 per cent of diagnoses, according to the Alzheimer Society.
Elizabeth Leonard died in 2016, five years after her diagnosis. Then, in 2020, fate dealt the family another blow when Elizabeth's husband, Blair, was diagnosed with dementia.
Aging population, growing concern
More and more families like the Leonards will be hit by a dementia diagnosis in the near future, according to Shirley Lucas, CEO of the Alzheimer Society of Newfoundland and Labrador.
She says about 10,100 people in the province are affected by dementia. By 2030, it will be 14,500 — an increase of more than 40 per cent.
That estimate reflects numbers released by the World Health Organization in early September, which suggests the number of people with dementia worldwide will increase by 40 per cent by the end of the decade, from 55 million to 77 million.
To Lucas, the numbers are easily explained — age is the main risk factor for dementia, which primarily affects people 65 years and older, and N.L. has a rapidly aging population.
"We have the highest number of seniors in the population … so it's going to have some pretty significant impacts," said Lucas.
"I'm scared at the numbers because they're overwhelming," said Butler.
"We'll almost effectively have to double the number of nursing home beds we currently have. So that model obviously can't be sustainable."
Butler says support systems for caregiver families like the Leonards need to be enhanced if more people are to take care of their family members within the next decade.
The provincial home dementia care program, developed by Butler in 2014, looks at ways of doing that.
"We got to change fundamentally our way of doing business. The way we're doing business now is … default programs to long-term care," said Butler.
"The default program has to be to age in place."
The program, which is now in its third year, has supported about 350 families and provided palliative care to 64 people to date.
"They aged in place and they died in their homes and they died with their families around them. And I think that's a wonderful gift," said Butler.
More support needed for caregivers
According to the department, the federal government is supporting home and community care in the province with over $43 million over five years.
Roseanne Leonard agrees that caregivers need more support.
As her mother's illness progressed, she said, her father's overall well-being was also affected.
"He'd be waking up overnight, wondering if she was still OK," said Leonard. "You could tell that steady worry on him was starting to wear him down."
To give Blair some respite time, the family hired a home-care worker.
Overall, says Leonard, better training and wages are needed so home-care workers can adequately support the growing number of caregivers.
"It's not a babysitting role," said Leonard.
"We need to … make sure that they are doing the job that a caregiver would be doing."
Butler agrees and adds that the estimated 20,000 home support workers in the province are largely untrained.
"They need to know how to deal with the behaviours that you see," said Butler, including the personality and mood changes associated with dementia.
"Untrained workers … actually make the behaviours worse. So that can be a problem for a family."
The Alzheimer Society's dementia passport program — online education for health care professionals — is addressing this gap in education.
The project has provided training to more than 2,000 people since its launch in 2020.
"Obviously, the community is feeling the need because that's a huge uptake in a very short period of time," said Lucas.
Lucas adds that the local Alzheimer Society is also working on introducing dementia-friendly communities and businesses in the near future. Staff would be trained on how to communicate with people with dementia and the architecture would be adapted to their needs — to prevent falls or confusion, for example.
"It's helpful to the care partner to have that inclusivity when they go out to places that if a behaviour happens, that's OK," said Lucas.
Leonard agrees that training and awareness in society are getting better but says more still needs to be done.
"The increasing number of families that are going to have to manage Alzheimer's is going to put a big strain on the system," said Leonard.
"We need more guidance and support to keep our loved ones at home in a safe environment, to allow employers the flexibility to support those caregivers."
"It's really a very inclusive, collaborative effort to make sure that we can care for our loved ones in places where they're best cared for."
If you need support because you or a loved one has received a dementia diagnosis, you can call the Alzheimer Society N.L. toll-free at 877-776-0608.
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