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Barriers to respite: Why do caregivers of people with dementia not use respite services?

The Bottom Line

  • Respite services are meant to provide a break for caregivers who have a heavy burden.

  • Studies show that many caregivers of people with dementia are less likely to use the various respite services available.

  • Barriers to the use of respite services must be identified and removed, and services must be responsive to the needs of caregivers and people with dementia.

The aging population is accompanied by an increase in the number of people with health problems, such as neurocognitive disorders. An estimated 50 million people worldwide are living with dementia, and this number is expected to triple to 152 million by 2050. In Canada alone, more than 402,000 people aged 65 and over have dementia. In addition to memory loss, older adults with dementia can no longer perform daily living activities or take care of themselves, and can demonstrate challenging behaviours.

Many of these people live in residential and long-term care facilities, but others are still living at home with support from their caregivers. Caregiver burden can take a toll. These caregivers often experience very complex and painful moments. Studies revealed that they have to assume new complex roles and responsibilities, cope with challenging behaviours associated with dementia, and often feel isolated.(1; 2; 3)

Services exist to support them, including respite services. Several types of respite services exist in Canada, including respite services at home or outside the home (for example, day centres or facilities where people with dementia can be admitted for a few days or weeks) . (4)

Despite the burden and distress of these caregivers, many do not use existing respite services.(5) What can explain this situation?

What research tells us

A systematic review examined 14 studies to identify factors associated with not using different types of respite services, and identify ways to better meet the needs of caregivers and people living with dementia.(6) Several factors were identified, including demographic characteristics, health beliefs, and personal and community factors.

Demographic characteristics
If the caregiver is also the spouse of the person with dementia, it is associated with a reduced use of day-care respite services. As for respite services at home, it seems that women over the age of 70 who act as caregivers are less likely to benefit from these services. Although research findings are mixed, studies show that belonging to an ethnic minority appears to influence the type of services used.

Health beliefs
Attitudes towards respite services and other beliefs can influence caregivers. If they do not consider these services useful, they will not use them. If they believe that helping their loved ones as their duty, they are less likely to use day-care respite services.

Personal and community factors
Use of respite services outside the home may be low if they are difficult to access. Services must be provided where people live and work, and be easily accessible (whenever possible reducing the burden of transportation and wait times).

Caregivers should also be made aware of existing services in their community and how to access them. They must also have the financial resources to enable them to use the services. Studies show that caregivers with low income or living in low-density areas were less likely to us respite services (especially at home).

Being prepared to ask for help

This review highlights the importance of assessing the needs of people living with dementia and their caregivers to target the services they need.

Whenever you are in contact with the health and social services system (for example, when your loved one is about to return home from hospital), do not hesitate to ask questions about respite services and other supports available in your community. A guide like the one prepared by Health Quality Ontario can help you have such conversations.


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References

  1. Duggleby W, Ploeg J, McAiney C, et al. Study protocol: Pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers. BMC Geriatr2017;17(1): 181.

  2. Duggleby W, Ploeg J, McAiney C, et al. Web-based intervention for family carers of persons with dementia and multiple chronic conditions (My Tools 4 Care): Pragmatic randomized controlled trial. J Med Internet Res 2018;20(6): e10484.

  3. Ploeg J, Northwood M, Duggleby W, et al. Caregivers of older adults with dementia and multiple chronic conditions: Exploring their experiences with significant changes. Dementia (London) 2019: 1471301219834423.

  4. Canadian Healthcare Association. Respite care in Canada. Ottawa, Canada, 2012.

  5. Phillipson L, Jones SC, Magee C. A review of the factors associated with the non-use of respite services by carers of people with dementia: Implications for policy and practice. Health & Social Care in the Community. 2014;22(1):1-12.
 

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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