27 May 2020

It is suggested that take-up would be greater if carers were to see respite as mutually beneficial to the person with dementia as well as themselves (O’Shea et al. 2017); a study in Korea suggested that carers valued government intervention regarding this (Park et al. 2004).

This project aims to investigate the use of residential respite services by people with dementia and carers: their experiences, access and outcomes

Couple sitting on a bench

The need for greater understanding of respite care

Respite care aims to provide family carers with a break and the person being cared for with a break too. By ‘carer’, we mean a person who provides unpaid care or support for a family member who cannot cope without this support due to their dementia. The challenges of looking after someone with dementia at home are well documented; they include possible exhaustion, stress and burnout. However, carers seem more likely to take up respite services if they see them as mutually beneficially to both them and their relative with dementia.

This is why terms such as ‘short breaks’ or ‘restorative care’ are sometimes used. Carers may want a break that is short-term – an afternoon to go shopping for example - but sometimes they can be longer and residential – for example, the person with dementia goes for a temporary stay in a care home while a family carer goes on holiday or has a rest. We use the term ‘residential respite’ to mean a short stay in a care home.

Both our review of existing studies and our own current work have highlighted the need for greater understanding of respite at this time. The context of care services is changing. For example, respite is now generally ‘purchased’ by families (out of their own pockets or through personal budgets) and not simply provided by local authorities. Care homes can choose to advertise themselves as offering residential respite care and make individual arrangements with families about what they will provide.  Several see this as an area of growth in their business.

Finally, the question of paying for care is high profile; this study will provide evidence if families are already anticipating changes in the ‘care cap’ (the proposed limit to what people should pay for care) and choosing care options as a result. In this study, we will be focusing on residential respite. 

There is limited understanding of how residential respite in a care home (for a short break) is used by people with dementia and carers: how is it arranged, experienced; what people's expectations are, or why do some not use respite?

Kritika Samsi

Dr kritika Samsi

How the research will be carried out

The research team aim to collect data from 80 people with dementia and carers. The study is in two parts.

• Part 1: mapping residential respite provision (models of and payment for), including a call for evidence from the care home sector and a workshop with stakeholders.

• Part 2: 18-month in-depth interview study to address the research objectives.

Following gathering of evidence, researchers will ask three  groups the following questions:

(1) People who have used residential respite: what were their experiences and how it was all arranged and paid for; 

(2) People who have declined residential respite: what are their views and beliefs, what other care arrangements were made, and what could be done better;

(3) People who are waiting for planned respite for the first time: interviews before to ask about expectations, ways in which respite was arranged, and interviews 1-4 weeks after the break to ask about experiences.

We will also ask carers about their general well-being and the overall impact of residential respite on their quality of life and future. We will involve people with dementia and carers in our study (as well as providers and professionals) – to develop interview questions, think about findings, and help with wording of findings produced.

How patients, carers and the public are involved in the research

Active collaboration with key stakeholder groups will take place through the formation of a Study Advisory Group of people with dementia, carers, residential respite providers, social workers, nurses, and allied health professionals working with people with dementia and carers, representatives from Carers UK and Alzheimer’s Society, and other dementia specialists. We aim for this diverse group to result in an exchange of ideas that will generate rich information for us to work with. We will seek their ideas in understanding the emerging data; and in producing a lay summary of findings, so these are accessible to people with dementia and carers.

Potential benefits of the study

Understanding these perspectives and studying the outcomes of experiences will inform care providers’ planning, as well as the information and advice given by health and care practitioners (including dementia navigators). Findings may also shed light on what interventions may be developed for people with dementia and carers who want to use respite services, but face certain barriers, and how public funding such as Personal Budgets and Personal Health Budgets are being used to fund residential respite.

The study is funded by the Alzheimer’s society. It was adopted by ARC South London in May 2020 and will be completed by January 2021.

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