“Heavy burden on the system”: Expected rapid increase in dementia diagnosis by 2030

Rosanne Leonard of Paradise, Newfoundland and Labrador remembers the day her mother Elizabeth was diagnosed with Alzheimer’s disease like yesterday. It was late October 2011 and her mother was only 58 years old.

“It was really shocking for us, and especially at such a young age, to get this diagnosis,” Leonard said.

The family decided to take care of Elizabeth at home and made her husband Blair her primary caregiver.

“We had the diagnosis with our mom as a family, and we managed it and loved each other with her through it,” Leonard said.

Alzheimer’s disease is the most common form of dementia and, according to the Alzheimer’s Association, accounts for 60 to 80 percent of diagnoses.

Elizabeth Leonard died in 2016, five years after her diagnosis. Then, when Elizabeth’s husband Blair was diagnosed with dementia in 2020, fate had another blow to the family.

Aging population, growing concern

Families like Leonard’s are more likely to be diagnosed with dementia in the near future, according to Shirley Lucas, CEO of the Alzheimer’s Association in Newfoundland and Labrador.

She says about 10,100 people in the state are affected by dementia. By 2030, it will be 14,500, an increase of more than 40%.

This estimate reflects figures released by the World Health Organization in early September. This suggests that the number of people with dementia worldwide will increase by 40% from 55 million to 77 million by the end of the decade.

For Lucas, the numbers are easy to explain. Age is a major risk factor for dementia, affecting mainly people over the age of 65, and the NL population is aging rapidly.

“We have the most elderly people in the population … so it will have a pretty significant impact,” Lucas said.

Dr. Roger Butler, a family doctor specializing in geriatrics at St. Johns, said the state was found to be difficult to predict, especially when it comes to the care environment.

“I’m scared of the numbers because they’re overwhelming,” Butler said.

“The number of beds in current nursing homes needs to be nearly doubled, so the model is clearly unsustainable.”

Butler said the support system for caregiver families like Leonard needs to be strengthened in order for more people to take care of their families within the next decade.

The state home dementia care program, developed by Butler in 2014, is exploring ways to do this.

“We had to radically change the way we do business. The way we do business today is … the default program for long-term care,” Butler said.

“The default program should be set to the appropriate age.”

This year’s third year, the program has helped about 350 families and provided palliative care to 64 people.

“They age on the spot, they died in their homes, and they died with the families around them, and I think it’s a great gift,” Butler said.

Caregivers need more support

In a statement to CBC News, the Department of Health and Community Services recently said it has expanded Butler’s program from eastern health areas to central health areas and appreciates further expansion.

According to the ministry, the federal government has supported more than $ 43 million in state home and community care over a five-year period.

Rosanne Leonard agrees that caregivers need more help.

As her mother’s illness progressed, her father’s overall well-being was also affected, she said.

“He woke up all night and wondered if she was still okay,” Leonard said. “It turns out that steady worries about him started to tire him.”

The family hired a home care worker to give Blair a little rest.

Overall, Leonard says home care workers need better training and wages to adequately support an ever-growing number of caregivers.

“It’s not the role of a babysitter,” Leonard said.

“We … need to make sure they are doing the work that the caregiver will do.”

Butler agreed, adding that an estimated 20,000 home support workers in the state were poorly trained.

“They need to know how to deal with the behaviors you are seeing,” Butler said, including dementia-related personality and mood changes.

“Untrained workers … actually worsen their behavior. It can be a problem for their families.”

The Alzheimer’s Disease Association’s Dementia Passport Program (online education for medical professionals) addresses this educational gap.

The project has provided training to more than 2,000 people since its inception in 2020.

“Obviously, it’s a very short-term, large-scale uptake, so the community feels the need,” Lucas said.

Lucas adds that the local Alzheimer’s disease association is also working to introduce dementia-friendly communities and businesses in the near future. Staff are trained in how to communicate with people with dementia, and architecture is tailored to their needs to prevent falls and confusion.

“For care partners, having that inclusiveness helps them when they go to places where it’s okay if action happens,” Lucas said.

Leonard agrees with increased training and awareness in society, but says he needs to do more.

“As more families have to manage Alzheimer’s disease, the system will be overwhelmed,” Leonard said.

“We need more guidance and support to keep our loved ones at home in a safe environment and to give employers the flexibility to support their caregivers.”

“It’s a really very comprehensive and collaborative effort to allow loved ones to be cared for in the places they are most cared for.”

If you or your loved one needs help because you have been diagnosed with dementia, call Alzheimer’s Society NL for free at 877-776-0608.

Read more from CBC Newfoundland and Labrador

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