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People diagnosed before age 65 present unique care challenges

 

Fewer Canadians are diagnosed with dementia before age 65 than as seniors — but their needs can be just as great.

Young-onset dementia is diagnosed before age 65 and tends to be unique in many ways. Early-onset forms of adult neurodegenerative conditions such as Alzheimer’s, vascular and frontotemporal dementia are some of the most common causes of dementia in those younger than 65.Reference1Reference2 At the time of diagnosis, people with young-onset dementia may still be working, taking care of their children and parents, and meeting financial commitments (mortgages, loans, etc.). Of all Canadians with dementia, the proportion younger than 65 is approximately 3%. Among the 2,481 patients younger than 65 hospitalized with dementia, 54% were male.

People with young-onset dementia tend to stay longer in hospital, and a higher proportion of them have extremely long hospital stays. This may be due to difficulties in finding age-appropriate services for younger patients. In addition, people with young-onset dementia tend to be physically fit, so finding appropriate home supports may take time.Reference3

While living at home with home care, more people with young-onset dementia experience severe cognitive impairment than their senior counterparts. Cognitive impairment can lead to potential employment difficulties that increase the burden for those already subject to competing caregiving and financial responsibilities.Reference4 There are various interventions and models of care specifically for people with young-onset dementia and their caregivers; however, there is limited evidence on the development and efficacy of those targeted services.Reference5

 

How is dementia care different for people with young-onset dementia?

 

At home with home care

In long-term care

 

In hospitals

Almost 2,500 Canadians younger than 65 living with dementia had more than 4,500 hospital admissions in 2015–2016. This represents 3.1% of all hospital admissions for people living with dementia.

empty cell Young onset Seniors

Sources
Discharge Abstract Database and Hospital Morbidity Database, 2015–2016, Canadian Institute for Health Information.

Proportion of men 54% 42%
Length of hospital stays

Mean 27 days

Median 8 days

Mean 20 days

Median 8 days

Hospital stays longer than 6 months 2.2% 0.9%
Discharge from hospital to home care 24% 31%
Discharge from hospital to long-term care 26% 31%
 

At home with home care

More than 2,500 Canadians younger than 65 living with dementia received home care in the community. That was 3.3% of all people living with dementia who received home care in Newfoundland and Labrador, Ontario, Alberta, B.C. and Yukon.

empty cell Young onset Seniors

Source
Home Care Reporting System, 2015–2016, Canadian Institute for Health Information.

Severe cognitive impairment 27% 20%
Depression 35% 25%
Medical instability 69% 76%
Care provided by children 18% 58%
Care provided by spouse 44% 32%
Care provided by others 38% 10%
Average unpaid caregiver hours per week 31 26
 

In long-term care

Almost 4,000 Canadians younger than 65 living with dementia were residents in long-term care or nursing homes. They represented 3.2% of all residents with dementia in Newfoundland and Labrador, Ontario, Saskatchewan, Alberta, B.C. and Yukon.

empty cell Young onset Seniors

Source
Continuing Care Reporting System, 2015–2016, Canadian Institute for Health Information.

Potentially inappropriate antipsychotic drug use (unadjusted rates) 42% 27%
Restraint use (unadjusted rates) 10% 9%