Respite Care for People with Dementia and their Carers

Emma O’Shea et al. | Respite Care for People with Dementia and their Carers: A Qualitative Study with Multiple Stakeholders | Age and Ageing | Volume 48, Issue Supplement 3 | September 2019 | Pages iii17–iii65

Background

Traditional models of respite, particularly those based within residential care settings, may not always be effective, and there is evidence of low acceptability for some people with dementia and carers. The aim of this study was to synthesise multiple stakeholders’ experiences of respite services for dementia and their perspectives on respite service development.

Methods

Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n=6), carers (n=9), front-line staff (n=7), managers (n=8), policy-makers/academics (n=5). Data were interpreted inductively using thematic analysis, with a focus on latent patterns of meaning.

Results

Three salient themes were identified (‘Phases of Transition’, ‘Person-centred Respite Care’; and ‘Recalibrating Respite’). Three distinct phases of respite transitions for people with dementia and carers are discussed. Respite services that actively support transitions through empathic communication regarding clients’ concerns, support needs and preferences are highly valued. Clients described care resembling a ‘person-centred’ approach as their ideal, without using that term, but people with dementia do not always experience this type of care. The majority of providers indicated that they provide ‘person-centred care’, but many demonstrated a poor understanding of the concept; many of these providers have a biomedical view of dementia and the personhood status of people with dementia. Regarding service development, clients would prefer more choice, flexibility and responsiveness, including a shift away from residential provision towards an integrated continuum of personalised, strengths-focused community-based and in-home supports.

Conclusion

Any recalibration of respite towards a home/community focus will require a transformation in how dementia is constructed by society, as well as a significant financial investment. Other implementation considerations include: staffing and staff competency; and the co-ordination, integration and regulation of personalised, home-based care models. Finally, it may be necessary to replace the outdated term ‘respite’ with an alternative nomenclature that is not discordant with person-centred care principles.

Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia

Study results suggest that the dementia first aid course is effective in changing the knowledge and attitude of dementia caregivers. It is hoped that this will also enhance their ability and skills of caring, which may in turn reduce caregivers’ sense of burden and wellbeing | British Journal of Medical Practitioners

Abstract
Objective: Pilot evaluation of the impact of a ‘Dementia First Aid’ (DFA) training course on the knowledge and attitude of family caregivers of people with early dementia.

Methods: The participants in the study were primary family caregivers of people with dementia residing in northwest Hertfordshire. The 4-hour ‘Dementia First Aid’ course was delivered by NHS professionals. The training was organised once every second month from November 2015 till March 2017. The course provided overview of dementia and its impact on the person and their families, mindfulness based stress reduction, and the dementia first aid action plan for crises. The participants were asked to complete the Alzheimer’s disease Knowledge Scale (ADKS) before and after the completion of the course & complete carer burden scale (Zarit Burden Scale). Participants were asked to complete the scales after six months.

Results: The study sample comprised 65 people who had completed the DFA course. All completed pre- and post-training measures (ADK and Zarit burden scale), and a further 34 provided follow-up data approximately 6 months later. The scores were compared using a correlated group t-test. ADK scores improved significantly immediately after attending the course. For the subgroup that completed data at 6 months, the improvement in scores was sustained.

Conclusions: This ‘Dementia First Aid’ course appears to be effective in improving family caregiver’s knowledge of dementia and this knowledge was sustained at 6 months follow up.

Full article: Rahul Tomar et al. | Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia: findings of a pilot evaluation | British Journal of Medical Practitioners | 2019;12