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Evidence to Improve Care

8

Caregiver Assessment and Support

Caregivers of people living with dementia are assessed on an ongoing basis and offered supports to address their individual needs.


Caregivers play a critical role in supporting the health, well-being, and functional independence of people living with dementia. As dementia progresses, cognitive changes interfere with a person’s ability to perform everyday activities and manage their personal affairs. They increasingly require more support and assistance from their caregivers.

While caregiving can be a rewarding experience, it is often described as stressful and can result in considerable physical, psychological, social, and financial impacts. For example, caregivers experience high levels of stress and social isolation and have an increased risk of psychological and physical health problems (e.g., depression, anxiety, cardiovascular problems, and lower immunity). Caregivers also have to balance their caregiving with other responsibilities, such as their careers, family obligations, and own health needs.

Caregivers should be assessed on an ongoing basis to see how they are managing. They should be offered supports that are responsive to their individual needs and the person’s stage of dementia. Supports such as transportation or respite care services should be provided for caregivers to enable them to participate in services or activities.

For Caregivers

Caregiving can be a rewarding experience, but it can also be stressful. You should be assessed on an ongoing basis by a member of the health care team or your own primary care provider to see how you are coping and to help you get the supports you need to help you with your caregiving responsibilities. Supports can include training, support groups, home care, and temporary respite care for the person you are caring for. Respite care can give you a break from the caregiving routine and give you time to take care of yourself. 


For Clinicians

Ensure that you assess caregivers on an ongoing basis to see how they are managing. If needed, offer supports that are responsive to their needs and the person’s stage of dementia.


For Health Services

Ensure systems, processes, and resources are in place for providers and teams to assess caregivers. Ensure supports are available to address caregivers’ needs.

Process Indicators

Percentage of caregivers of people living with dementia who receive an assessment

  • Denominator: number of caregivers of people living with dementia
  • Numerator: number of people in the denominator who receive an assessment
  • Data source: local data collection

Percentage of caregivers of people living with dementia who have received an assessment and are offered supports to address their individual needs

  • Denominator: number of caregivers of people living with dementia who have received an assessment
  • Numerator: number of people in the denominator who are offered supports to address their individual needs
  • Data source: local data collection
Structural Indicator

Local availability of a comprehensive range of respite services for caregivers of people living with dementia that meet the needs of both the caregiver and the person living with dementia

Caregiver assessment

Caregivers of people living with dementia should receive an ongoing assessment of their individual needs and preferences. This includes, at a minimum, assessment of their emotional, psychological, and social needs.

Caregivers who experience psychological distress and negative psychological impact should be referred to their primary care provider or mental health specialist for assessment and treatment.

Supports

Caregivers of people with dementia should have access to a range of tailored supports. These may include:

  • Individual or group psychoeducation and counselling
  • Peer support groups, tailored to the needs of individuals, depending on the dementia stage of the person being cared for and other characteristics
  • Support and information available by telephone and through the Internet
  • Training courses about dementia, services, and communication and problem-solving in the care of people living with dementia
  • Respite services, including planned and emergency respite, such as adult day programs, overnight care, and short-term residential care. These should meet the needs of both the caregiver (in terms of location, flexible timing and duration, and timeliness) and the person living with dementia (in terms of involving meaningful and therapeutic activities and being in an environment that meets their needs).

Supports such as transport or respite care services should be provided for caregivers to enable them to participate in the services and activities described above.

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