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Most seniors with dementia in Canada live at home

About 61% of seniors with dementia in Canada live at home — and they require support while staying there.

There are approximately 5.8 million seniors in Canada and about 5.5 million live at home. CIHI analysis finds that of the estimated 431,000 seniors living with dementia in 2015–2016, more than 261,000 were estimated to reside outside of publicly funded long-term care or nursing homes.

“Canadians living with dementia want to maintain their independence; they want to live at home and engage with their community,” said Pauline Tardif, CEO of the Alzheimer Society of Canada. “Comprehensive home and community care is an essential part of this equation. It helps maintain quality of life for people with dementia while also providing needed support for caregivers.”

 

61%

Seniors with dementia live outside of long-term care or nursing homes

25%

Seniors with dementia who receive care at home exhibit any responsive behaviours

6×

Seniors living with dementia who receive their initial assessment to determine eligibility for long-term care in a hospital are 6 times more likely to enter residential care than those assessed elsewhere

7

Seniors with dementia and their caregivers can follow 7 key strategies to help them remain in the community longer

Living at home with dementia

As Canada’s population ages and chronic disease rates increase, federal, provincial and territorial governments are recognizing the need to make home care more available and accessible. About 61% of seniors in Canada with dementia live outside of long-term care or nursing homes: 69% of those younger than 80 and 58% of those 80 and older. A Common Statement of Principles on Shared Health Priorities is a recent agreement between the federal, provincial and territorial governments to provide substantial federal investment over 10 years, in part, to improving access to health care and support services at home and in the community.Reference1

Majority of seniors with dementia live outside of long-term care or nursing homes

2015–2016 proportion of seniors with dementia living outside long-term care. Age 65–79: N.L., 49%; Ont., 71%; Alta., 72%; B.C., 61%; Y.T., 43%; Canada, 69%. Age 80+: N.L., 41%; Ont., 59%; Alta., 64%; B.C., 50%; Y.T., not reportable; Canada, 58%.

Proportion of seniors with dementia living outside of long-term care homes, 2015–2016

Among seniors with dementia, 69% younger than 80 and 58% age 80 and older live outside of long-term care homes.

Sources
Continuing Care Reporting System, 2015–2016, Canadian Institute for Health Information.
Public Health Agency of Canada. Public Health Infobase: Canadian Chronic Disease Surveillance System (CCDSS) External link, opens in new window. Accessed February 28, 2018.

 

Seniors with dementia living at home have complex care needs

Seniors with dementia who receive care at home may present more challenges than those without dementia because they are more clinically complex. Some of the characteristics of these individuals include the following:

  • 1 in 5 have severe cognitive impairment
  • 1 in 4 (28%) require extensive assistance or are dependent for activities of daily living
  • 1 in 4 exhibit any responsive behaviours
  • 1 in 4 have signs of depression

Seniors with dementia who live at home score worse on behavioural and cognitive scales compared with other seniors living at home and receiving care. Seniors with dementia exhibit responsive behaviours such as verbal and physical abuse, socially inappropriate behaviour and resisting care more frequently than those without dementia (25% and 4%, respectively). However, among all seniors with dementia receiving home care, a larger proportion do not exhibit any responsive behaviours (75%) than do (25%). Seniors with dementia score the same in health instability (as measured by the CHESS Scale) and are admitted to hospitals less frequently. The CHESS Scale (Changes in Health, End-Stage Disease, and Signs and Symptoms) detects health instability and is designed to identify individuals at risk of serious decline.

 

Caring for individuals with dementia can be challenging

Characteristics of seniors with dementia receiving home care, 2015–2016
  With dementia Without dementia

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

Severe cognitive impairment (Cognitive Performance Scale ≥4) 20% 2%
Signs of depression (Depression Rating Scale ≥3) 25% 20%
Any responsive behaviours (Aggressive Behaviour Scale ≥1) 25% 4%
Dependence in ADLs (Activities of Daily Living Hierarchy Scale ≥3) 28% 15%
Wandered at least once in the last 3 days 10% 0%
Some indication of health instability (CHESS Scale ≥1) 76% 76%
Were admitted to hospital at least once in the last 90 days 24% 32%
Had visited emergency room at least once in the last 90 days 20% 23%

To review characteristics of seniors with dementia in long-term care, refer to the table Caring for residents with dementia can be challenging.

 

Transitions into long-term care

Of seniors with dementia, about one-third of those 65 to 79 and 42% of those 80 and older live in a long-term care home. Overall factors influencing long-term care admission for people with dementia were assessed with the methodology used in CIHI’s Seniors in Transition report.Reference2 6 factors significantly increase the odds of entering long-term care or nursing homes following an initial assessment to determine eligibility for long-term care for individuals with dementia:

  • Seniors with dementia who receive their initial assessment in hospital are about 5.6 times more likely to enter long-term care as those who are assessed elsewhere.
  • Seniors with dementia who live alone (without a primary caregiver in the home) are around twice as likely to enter long-term care as those who live with their primary caregiver.
  • Seniors with dementia who have a caregiver who is unable to continue providing care are around twice as likely to enter long-term care.
  • Seniors with dementia who have a recent history of wandering are about 1.7 times more likely to enter long-term care.
  • Seniors with dementia with a moderate level of cognitive impairment are about 3.8 times more likely to enter long-term care than seniors with no cognitive impairment; those with a very severe level of cognitive impairment are about 3.5 times more likely than those with no cognitive impairment.
  • Seniors with dementia who are dependent on physical assistance for daily activities like personal hygiene, eating and walking are 3.8 times more likely to enter long-term care than those who are independent; this decreases slightly to about 1.4 times if they require only supervision.

These identified characteristics can help us understand some of the challenges associated with providing care to individuals with dementia in the home and can help inform strategies to better support them and their caregivers to pursue home care for longer and more safely.

 

Unpaid caregivers and the supports available

The federal, provincial and territorial governments recognize the need to keep seniors at home as long as is suitable for the person, as well as the benefits of doing so. They also recognize that their caregivers require significant support. The literature describing and analyzing services that support and sustain people with dementia living in their own homes is growing.Reference3 The expansion of these services and programs is also growing, partly due to policies and practices that are increasingly emphasizing the benefits of supporting people to live in their own homes, for the individuals, their caregivers and health systems at large.Reference3 While there are multiple gaps in the evidence base, some of the practices and recommendations that may help keep seniors with dementia in the community longer includeReference2Reference3Reference4

  • Avoiding unnecessary hospitalizations by ensuring safe environments and providing assistance and support with more instrumental activities of daily living like shopping, food preparation and managing finances
  • Improving early detection, which could be beneficial in modifying lifestyle in order to delay the onset of symptoms as long as possible and in expanding cognitive reserve through intellectual stimulation
  • Maintaining and improving activities of daily living, like getting dressed and managing personal hygiene, by providing rehabilitation/exercise programs
  • Providing group housing options for seniors who would otherwise be living alone and unsupported
  • Providing better technology and support to seniors with dementia in the community
  • Providing meaningful breaks to unpaid caregivers through respite care and adult day care programs for individuals with dementia
  • Ensuring that education, training, practice guidelines and tools for front-line home care providers are available to support them to provide high-quality person-centred dementia care

Providing effective support to those living with dementia in the community and their families is an important component of dementia strategies. Such support helps caregivers to maintain their caregiving activities and have a personally rewarding experience. Find out more about some of the community support resources available for caregivers in Unpaid caregiver challenges and supports.