‘ReThink Respite’ aimed to address the barriers to respite for people with dementia and their carers. Its objectives were to improve carers’ knowledge about, attitudes toward, and uptake of, respite services and strategies.
‘ReThink Respite’ was a multicomponent pilot intervention informed by theory, formative research and a co-design process. It supported the re-conceptualisation of respite as part of positive caregiving and of benefit to both carers and people with dementia. Delivered in the Illawarra-Shoalhaven in NSW (Australia) from February 2015 to October 2016 the program supported activities which included: media and awareness raising; education; a website; and decision aids and checklists to support finding and choosing local respite services and strategies. Finally, the program also offered an individualised motivational coaching program which carers and people with dementia could self-select to participate in. A longitudinal survey was used to evaluate carer exposure to project activities and to evaluate changes in: carer knowledge about, attitudes towards, and use of respite services; and carer perceived need for respite, burden, and self-efficacy. Analysis examined between groups differences between those exposed to Community Level Activities (media, website, education) (Group 1) and those who also self-selected to participate in Respite Coaching (Group 2). Analysis of changes over time were conducted through McNemar Test of Change for categorical data, and paired t-tests or Wilcoxen Signed Rank Test.
Preliminary analysis was conducted on n=44/70 eligible carers who completed a survey at two time points [n=26 (Group 1) and n=18 participants, (Group 2)]. Compared to Group 1, Carers in Group 2 who elected to participate in Respite Coaching showed significant improvements over time with regards to their respite knowledge [e.g. ‘ability to name three respite services’ (Z= -2.280, p=.023)], positive attitudes (e.g. ‘respite services are useful and beneficial to my family member/friend’ (Z= -2.157, p= .031)] and self-efficacy to gain respite [e.g. ‘if I want to, I can easily access the appropriate respite’ (Z= -1.994, p=.046)]. They also increased in their intention to use respite [t (17) = -2.335, p=.032] and reported increased levels of personal gain from caring (Z= -2.543, p=.011). Without coaching, carers in Group 1 experienced negative changes with regards to their beliefs that respite services are ‘useful and beneficial to my family member/friend’) (Z= -1.977, p=.048); and their ability to ‘find organisations that provide services in the community to help them care for their family member/friend’ [t (25)= 2.465, p=.021]. Group 1 carers also showed a decrease in their confidence to ‘handle future care problems’ [t (25) = 1.800, p=.016], ‘keep their family member or friend as independent as possible’ [(t (25) = 1.678, p= .030] and reported a greater degree of ‘role captivity’ over the time of the intervention (t (24) = -2.092, p =.047).
This pilot study highlights the potential for one-on-one individualised coaching to enhance community level activities to promote knowledge, confidence and skills relevant to achieving respite. Respite coaching may also be useful to promote personal gain and reduce role captivity over time. Future research should seek to replicate these results using a larger sample and an experimental design.