Dementia diagnosed too late in Sask.: report

Through data, the research team found within one year, 3,270 adults in Saskatchewan were diagnosed, or otherwise identified, with dementia and 13,012 were living with it (aged 45 years and over).

“Up until now in Saskatchewan, we have not had information about actual numbers of people with dementia. We’ve relied on estimates and these estimates are calculated based on studies in other places … so we wanted to collect information on actual numbers of people with dementia identified in provincial health databases,” Morgan explained.

This information is helpful when developing policy, according to Morgan.

The report revealed the Prince Albert Parkland Health Region (PAPHR) has the lowest rate of incidence (new cases of dementia between 2012-13) and highest rate for prevalence (existing cases of dementia) in the province.

Morgan said they can’t give a reason as to why this was true, stating this kind of study wasn’t meant for analysis.

However, what the report did reveal that surprised both Morgan and Kosteniuk was the number of dementia cases in the province that weren’t identified until entering long-term care.

In all incident cases, 35 per cent were first identified in long-term care with 28 per cent diagnosed at admittance.

This means there was a certain amount of time where these patients could have been diagnosed and went without treatment.

“That’s the problem that concerns us in these data is that so many—a third of our cases that we were able to identify—first showed up in being admitted to long-term care and that’s not what we would consider a best practice,” Morgan said.

Morgan said they reviewed international dementia strategies to look at recommended best practices in dementia care and a recurring theme is early diagnosis.

“So that, you know, patients can be treated early, that they can get support for the caregivers and they can access community services. Often what we hear about, and in the literature, if people aren’t getting support and help often the caregivers burnout or end up in a crisis situation and then it’s really too late to help support them to keep their family member at home in the community,” Morgan said, which leads to premature entry into long-term care facility.

“This suggests there’s an issue with underdiagnoses here and this is a global problem.”

Some strategies being undertaken by countries around the world to improve early diagnosis, Morgan said, is better education for health-care providers and creating better support in the community, so physicians and families see there is help available.

“One of the barriers to seeking a diagnosis or for health-care providers in giving a diagnosis is that if they think ‘what’s the point of it; there’s nothing to help them anyway,’ but actually there is in terms of medications and supports and services,” Morgan said.

The report found there is a lack of services and care available in the province after looking at several aspects like primary health care, post-diagnosis support, home care and long-term care.

“We found that pretty much overall these services weren’t available as often as they could be, probably, and often as they should be. Specifically in rural areas outside of Saskatoon and Regina,” Kosteniuk said.

This also applies to information and education about care and the comprehensiveness of care, she added.

Recommendations

After to reviewing all the data, the RaDAR Team made some recommendations and finalized them at their annual dementia summit in Saskatoon. This summit included administrators, health regions, families and health-care providers that gave input on the recommendations presented.

“One of the key ones was that dementia should be included in the provincial chronic disease management quality improvement program because that program … provides a lot of incentive for health-care providers to diagnose and manage dementia like a chronic disease and it provides care pathways and assessment tools,” Kosteniuk said.

She said data is also entered and tracked to provide information for health-care providers.

In their earlier research, they often heard people say they didn’t know what to do for people with dementia, Kosteniuk explained, and it’s not done consistently around the province.

These guidelines would provide the best practice for a field that is constantly developing, she said.

Recommendations listed in the report

Include dementia in the provincial Chronic Disease Management Quality Improvement Program
Track quality indicators of dementia care provincially and by health region, to ensure that individuals are properly assessed, diagnosed, and managed within the health care system
Improve and encourage access to a timely and accurate diagnosis
Ensure that individuals with dementia and their families are adequately supported
Review the Provincial Strategy for Alzheimer Disease and Related Dementias in Saskatchewan (released in 2004) and consider aligning with the proposed national strategy while reflecting the needs of individuals with dementia and their families living in Saskatchewan

What’s next?

The Health Quality Council has been vital in gathering data and analyzing the numbers. Kosteniuk said they even had more data than what was presented in the report, so going ahead they’re going to look at trends in incident and prevalence rates over time. In addition, they’ll be looking at rural and urban comparison data.

The second phase of the report will examine administrative data and the research team will be looking at health-care patterns for service use across the databases, including home-care data.

Morgan said this will help them identify gaps in policy and services.

“We’re excited to be moving onto the next phase because a lot of work went into figuring out how to identify cases of dementia for this part of the study and we’ll be able to build on that for Phase 2, looking at health-care patterns and that will allows us to get a sense of whether people with dementia are getting the care and support they need,” Morgan said.

To read the full report, click here.

sstone@jpbg.ca

On Twitter: @sarahstone84

by Sarah Stone

Dementia diagnosed too late in Sask.: report

What's Trending