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MUN study to help people in early stage of dementia live independently

April Pike (left) and Karen Parsons are part of a research team studying the need for support services to aid people experiencing memory loss who are likely in the earliest stages of dementia.
April Pike (left) and Karen Parsons are part of a research team studying the need for support services to aid people experiencing memory loss who are likely in the earliest stages of dementia. - Contributed

Services, supports focus of research team involving Faculty of Nursing, School of Social Work

ST. JOHN'S, N.L. —

An experienced researcher when it comes to the topic of healthy aging, Karen Parsons knows there are older adults experiencing memory loss who could use help to continue living in their homes.

"I really felt that there were a lot of older adults with early memory loss who are still quite independent living in their homes who (were) telling me — and families as well — that they're really at a loss to know where to turn for support, for information, where to get services, what they should do. They're on the cusp of something that they really don't understand, and they know it's coming."

For those people in the early stage of dementia and on the verge of diagnosis, Parsons intends to identify what supports and services are needed. The associate dean of research at Memorial University's Faculty of Nursing is the primary investigator for a new study aiming to get to the bottom of this dilemma.

Parsons and the rest of her research team want to speak with people 50 and older who live at home and are dealing with mild memory loss or early dementia. The researchers also want to speak with family, friends or significant others who serve as informal caregivers.

While there are some who go to a doctor to seek advice, there are others wary of immediately getting help, Parsons says. She has had ongoing contact for years with the Alzheimer Society of Newfoundland and Labrador and has been in touch with provincial seniors' advocate Suzanne Brake, and knows there's a lot of good work happening now, but says there's still a missing piece to the puzzle. She is optimistic this study can help.

Scary diagnosis

"Nobody wants to be diagnosed with dementia," she said. "Everybody knows what dementia is, everybody knows what Alzheimer's is, and all chronic illnesses and acute illnesses are scary. But this particular illness really frightens people, because it's a life without life, and they know it can be devastating to all aspects of their life. They hesitate and they wait for various reasons. It's quite often in the later stages before things start happening — resources are sought or care is provided. We really want to get at that early stage where people are still in the know. What can I do? Or family members say, 'How can I help?' to maintain that individual in their own home for as long as possible.

“We know everybody ... wants to be at home and they do better at home. People live longer and healthier and have better quality of life. We want to get in there when there's still time to do something and make that life better."

Knowing that family, friends and significant others are who people with dementia turn to for help in the long run, Parsons felt it would be important to have their voices heard in the study.

"Most often, the older adult has that significant other — be it an adult child, a sibling or a spouse quite often — who is there to assist them and to guide them through this process, and that person is going to be there probably for the long haul. We need to get them in early with the older adult and get their perspective on what's happening, because that's the confidant as well for that person. Their perspective is also very important."

As health-care providers, nurses are the front-line workers and key players overall. Parsons said there are fabulous community health nurses and nurse practitioners working in Newfoundland and Labrador to help people dealing with the early stages of dementia.

"We're also looking at their perspective," she said, later adding her team will also contact social workers. "They hear the stories, probably more than anyone, about what's happening and what's going on with this group of people."

Joining Parsons on the research study are co-investigators April Pike from the Faculty of Nursing and Gail Wideman from MUN's School of Social Work, and research assistant Joanne Smith-Young. Anyone interested in learning more about the study can contact Parsons (709-864-2305, karenp@mun.ca) or Smith-Young (709-864-8145 or jsmithyo@mun.ca).

andrew.robinson@thetelegram.com
@CBNAndrew

This story was edited to correct information on the official name of Memorial University's Faculty of Nursing.

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