Dementia’s rising tide

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This article was published 03/07/2015 (3219 days ago), so information in it may no longer be current.

Sitting at her kitchen table holding a photo of her father, Lynn’s hands began to tremble as her eyes filled with tears.

“He’s not the same man I knew growing up — he’s not dad,” she said. “And that loss hurts every day … It’s painful every day.”

Alzheimer’s disease has taken the man Lynn used to know.

The Brandon Sun is protecting Lynn’s identity out of respect for her father, who still lives in a personal care home in the city.

The family first noticed a deterioration in their father after their mother passed away approximately five years ago.

“I think we had an idea because he was starting to forget things, but Mom covered for him a lot and helped steer him around conversations and kept a level of routine (and) consistency in his life,” Lynn said. “When that stopped, we really noticed a difference.”

In the subsequent years, conversations between Lynn and her father devolved to the point where she’s not sure if he knows who she is most days.

Their talks often take circuitous routes that regularly end with her father asking about a truck he used to own in the 1960s. While her response changes slightly based on the day, Lynn routinely tells her father that she just finished washing it and carefully parked it in the garage.

“It makes him happy to know someone is taking care of his truck — I’m not going to take that away from him,” Lynn said, acknowledging that the family hasn’t owned the truck for several decades.

While the conversation has changed, it’s how her father’s behaviour and mood have been altered that crushes Lynn.

At times her father — who she describes as a gentle, kind and caring man prior to the disease — can lash out. She has seen him get frustrated, and become violent and mean with family and staff.

“There are no words in any book that can describe how you feel when someone, someone you know and love, isn’t being them … and the things they are doing, they are doing to hurt other people,” she said. “My father was never like that —he isn’t like that. And the toughest part is being helpless to do anything about it.”

Her father would have done anything for his children, she said, and now, when he is at his most vulnerable, there is nothing they can do help him.

“It’s not fair,” Lynn said.

Forgetfulness, loss of energy and spontaneity are just some of the early warning signs of Alzheimer’s. Eventually, people with the progressive, degenerative disease begin to be disabled by it, often forgetting their most recent memories first. Mood and behaviour changes are common, and some people can get angry and violent.

In its final stages, patients can become unresponsive and memory can become so poor that no one is recognizable.

Alzheimer’s is just one form of dementia. It occurs when brain cells shrink or disappear, and are replaced by irregulary-shaped plaques or when thread-like tangles choke existing healthy brain cells.

Last month, a dementia patient had to be moved to another health-care facility in the city after he physically harmed another patient, according to a source familiar with the incident.

Prairie Mountain Health CEO Penny Gilson wouldn’t talk specifically about any one case, but said it’s not uncommon to move dementia patients to facilities where the layout might be more conducive to their illness.

Currently, there are more than 20,000 Manitobans living with Alzheimer’s disease or another dementia, according to the Alzheimer Society of Manitoba. That number is expected to swell to more than 34,000 in 25 years.

In the past, regional health authorities offered specialized wards for dementia patients; however, Gilson said with the increased prevalence of the illness, there was a philosophical shift to ensure every facility could handle dementia patients.

“Over time it was shown there are a large percentage of individuals who come into personal care environments that have some form of dementia,” she said. “So it wasn’t conducive to having particular units, but how do we meet the needs of this population of general.”

All staff are required to take a violence prevention program to respond to patients who might have an affinity for confrontation.

“We try to set up environments and train staff to recognize those signs and symptoms and hopefully prevent the aggression or violence,” Gilson said.

If the personal care home can’t handle them, they are moved out of the facilities.

“There are times people aren’t suited for personal care home environments for various reasons and they often end up in one of our psychiatric assessment units or in acute care where sometimes we have a higher level of staff and support,” Gilson said, adding that it’s a minority of clients.

With continued research into the illness, care methodology is changing.

Gilson believes that research should play a role in any new facilities built in PHM.

“Our hope would be that any new personal care home build would have specialized environments for these clients,” she said. “Environments that allow, hopefully, to deflate that restlessness.”

In 2008, there were more than 4,500 new cases of dementia in Manitoba, a number that is expected to rise to 9,350 by 2038, according to “Rising Tide: The Impact of Dementia in Manitoba 2008 to 2038.”

The study pegs the total economic burden at $1 billion in Manitoba, and that is expected to grow to more than $4.4 billion by 2038.

Alzheimer’s is the most common form of dementia, making up roughly 65 per cent of all forms of the illness.

While many people are concerned about Familial Autosomal Dominant Alzheimer’s — the form that is passed directly from one generation to another — it only accounts for five to 10 per cent of known cases, according to Norma Kirby, program director with the Alzheimer Society of Manitoba.

“Genetics is not the big player that people think it is,” she said. “There can be predisposition to a disease, but not necessarily a true genetic link.”

Sporadic Alzheimer’s is the more common form of the disease, accounting for 90 to 95 per cent of all cases. However, the role of heredity in this form is unclear and is the subject of research.

While the organization isn’t involved in diagnostics, it does work extensively with patients of the disease, including their family and friends to ensure they understand what changes may occur in the future.

In some cases, it means making financial and health plans with patients before the disease impairs their cognitive abilities. They try to keep the person suffering from dementia involved in the decision-making process for as long as they can, according to Kirby.

Good overall health is the best way to combat the disease — or at least, the portion of dementia that is associated with vascular problems, such as an impaired supply of blood to the brain caused by strokes.

Exercise, manage your blood sugar levels, and don’t smoke, Kirby said.

But it’s not foolproof.

“People can do all of those things right and because this is a disease that we don’t know what kicks it off, you could have done everything right and you can still end up with it because those plaques and tangles can still occur,” Kirby said.

The majority of people in Manitoba’s care homes have some notation of dementia on their charts, she said. Teaching family and friends how their relationship will change as a result of the disease is one of the society’s key drivers.

“It is colossally tough for families and we never tell them it is going to be easy,” Kirby said. “How do you find a way to honour their presence and grieve the changes, but find ways to work with that and move forward so that you’re not hoping each day was different? You wish it was different, but what is the person doing that you can still engage with? You want to concentrate on their preserved abilities as opposed to always looking at the losses and changes.”

It can be overwhelming for some people.

Sometimes seeing the person who used to be confident and the leader of the family lose his or her faculties leaves those who care for them feeling paralyzed.

It is made more daunting when their mood and behaviour changes.

“At that point, we tell families to feel free to blame it on the disease, don’t blame it on the person,” Kirby said.

The emotional cost is often mirrored with a financial cost.

Pressures on family caregivers are mounting. In 2011, Canadian caregivers spent 444 million in unpaid hours looking after someone with dementia, representing $11 billion in lost income. By 2040, they will be devoting 1.2 billion unpaid hours per year.

“If caregivers don’t stay healthy, there is always the risk you will end up with two patients,” Kirby said.

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