Question

For people with dementia and their carers, will respite care (as compared with no respite care or polarity therapy) affect rates of institutionalization?

Relevance to nursing care

Respite care can be defined as a service or group of services designed to provide temporary periods of relief or rest, or both, for caregivers. A role for nurses in caring for the person with dementia includes planning of respite care with families and carers of people with dementia with interdisciplinary team colleagues. Setting up respite interventions for the carer requires a coordinated approach to the intervention as it is predicted that in the coming years, there will be an exponential increase in the numbers of people affected by dementia as populations age. Community-based respite care programs have been advocated where the caregiver and the person with dementia may choose the care that best suits them to support the person with dementia to remain in the community for longer.

Understanding and being able to assess the effect of respite care on carers and people with dementia is important for future models of care. Therefore a systematic review was necessary to identify the best evidence for planning respite care interventions for people with dementia and their carers.

Study characteristics

This is a summary of a recently updated Cochrane Systematic Review.1 Participants included people with dementia living in the community and their full-time caregivers. Four randomized controlled trials (RCTs) containing 753 participants were included. Participants were those with dementia (or any age, sex or dementia type) who lived in the community and had a full-time caregiver and the full-time caregivers themselves. The intervention of interest included any respite care provided to caregivers by trained professionals, trained companions, and trained volunteers in home care, day care or institutional care. Interventions were compared with no respite care (three studies) and polarity (one study). The primary outcome of interest was the rate of institutionalization for the person with dementia, whereas the secondary outcomes for people with dementia included mortality, physical health, use of medications, cognition, other aspects of mental function, behaviour and activities of daily living, quality of life and evidence of abuse. The secondary outcomes for caregivers included caregiver burden, psychological stress and health, physical health, economic impact and quality of life. Follow-up was short-term for three studies (2 weeks), whereas the remaining study had extended follow-up to 8 weeks.

The methodological quality of included trials was considered very low. Unfortunately, results could not be pooled from the RCTs as the interventions and outcomes were too different and the primary outcome (rate of institutionalization) was not reported. None of the studies measured outcomes related to the people with dementia. Generally, no significant effects were seen in caregiver outcomes (caregiver psychological stress and health and quality of life) when respite care was compared with no respite care. One study found a statistically significant reduction in caregiver psychological stress and health measured on the Perceived Stress Scale supports polarity compared with respite care interventions (n = 38, mean difference 5.80, 95% confidence interval 1.43-10.17). However, there is a lack of information from the systematic review to draw relevant conclusions. No study assessed adverse outcomes.

Implications for nursing care

None of the three studies that compared respite care with no respite care reported on the rate of institutionalization. Nurses recommending respite care for persons with dementia cared for by full-time carers should undertake a full nursing assessment of the need and benefit for this type of care for both the person with dementia and the caregiver. The patient and caregiver assessment focus should include awareness of the broad range of respite care options that are available for the diverse set of users of these services for nurses to plan and draw from. Respite care provides valuable opportunities for professional re-evaluation of the person with dementia and what respite care options may be appropriate for the caregiver through communication and partnership with nurses and nursing care services.

Implications for research

Research design and interventions in the research ought to be approached with caution when including a vulnerable population in research. It is important that researchers consult widely with experts, including people with dementia. Also, studies involving vulnerable persons such as those with dementia need to be carefully designed to contribute to knowledge development where the design is cognisant of the capacity of the person to consent to, and take part in the research. Additionally, this systematic review highlights the need for high-quality studies and that study design issues have the potential to impact conclusions drawn about respite care.

Reference