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PO8. Respite care

Detailed programme, abstracts and presentations

PO8.1. Public involvement in research: Co-researching with carers of people with dementia in the PrAISED study

DI LORITO Claudio, GODFREY Maureen, DUNLOP Marianne, POLLOCK Kristian, VAN DER WARDT Veronika, HARWOOD Rowan

University of Nottingham, Nottingham, United Kingdom

Introduction: At a time when clinical research funders are seeking greater evidence of Patient and Public Involvement (PPI) in dementia research, still little is known about the practical implications of carrying out co-research alongside experts by lived experience in this field. We aim to report the experience of academic researchers and PPI members, who worked collaboratively to design, conduct and analyse qualitative interviews as part of the process evaluation of the Promoting Activity, Independence and Stability in Dementia (PrAISED 2) study.

Methods: 25 participants with dementia and their carers across 6 services in England were qualitatively interviewed to establish the mechanisms of impact and environmental factors which had an impact on their experience of taking part in a progressive and tailored physical activity and exercise programme delivered by professional therapists in the participants' homes. The topic guide for the interviews was developed through the collaboration of members of the PrAISED research team and carers of people with dementia, who co-conducted the interviews in the participants' homes and collaborated to data analysis and synthesis. Diaries with personal reflections on the process were compiled independently by all co-reserachers in all phases of the collaboration.

Results: The study is ongoing and results will be ready in the summer. We anticipate that the results will greatly contribute to advancement and good practice in this novel method of research. 

Conclusion: Preliminary data suggest that co-reserach in PrAISED is a succesful experiment, which may give added value to the quality of data gathered about participants' experience to take part in PrAISED. The professional collaboration and human rapport between co-researchers is crucial to ensure that the practical issues and challenges that co-research presents are adequately addressed. 

PO8.2. Respite care for people with dementia and their carers: A qualitative study with multiple stakeholders

O'SHEA Emma1, O'SHEA Eamon2, TIMMONS Suzanne3, IRVING Kate1

1Dublin City University, Dublin, Ireland, 2National University of Ireland Galway, Galway, Ireland, 3University College Cork, Cork, Ireland

Introduction: 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.

Aim: 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 (1) ‘phases of transition’, (2) ‘person-centred respite care’; and (3) ‘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 a continuum of personalised, strengths-focused community-based and in-home supports.

Discussion: 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.

PO8.3. Self- rated burden of care among next of kin of people with dementia attending a farm- based day care service

TARANRØD Liv Bjerknes1-2, ERIKSEN Siren1-3, PEDERSEN Ingeborg4, KIRKEVOLD Øyvind1-5

1Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Vestfold Hospital Trust, Norway, 2University of Oslo (UIO), Faculty of Medicine, Oslo, Norway, 3VID Specialized University, Oslo, Norway,  4Department of Public Health Science, Faculty of Landscape and Society, Norwegian University of Life Sciences, Ås, Norway, 5Norwegian University of Science and Technology, Gjøvik, Norway; The Research Centre for Age Related Functional Decline and Diseases, Innlandet Hospital Trust, Hamar, Norway

Objectives: Care farms offer adapted and quality-based welfare service using farm-based resources to promote health. In 2017, seven percent of the municipalities in Norway offered a farm- based day care for people with dementia. The information is sparse about the next of kin`s burden of care using farm- based day care as respite and more knowledge is needed.

The aim of this study was to explore the burden of care in next of kin to people with dementia attending a farm- based day care. The research question is: Which characteristics of next of kin and people with dementia attending a farm-based day care are associated with burden of care in the next of kin?

Methods: The study is a cross-sectional study conducted in 2017. 94 people with dementia and their next of kin (dyads) participated from 25 different farm- based day care for people with dementia in Norway. 62 % were spouses, living together with a person with dementia. The assessment of next of kin constituted of socio-demographic data, hobbies and physical activity, support, respite, depression and anxiety. We mapped burden of care with Relative Stress Scale. The assessment of people with dementia consisted of age, sex, cognitive-function, function of everyday activities and neuropsychiatric symptoms.

Results: The multivariable analyses showed that the characteristics associated with self-reported burden of care in the next of kin were; living together with a person with dementia, experience of anxiety, less social support and neuropsychiatric symptoms in the person with dementia.

Conclusion: Higher self-reported burden of care was found among next of kin living together with a person with dementia. These findings may provide a basis for recommending that health professionals in farm- based day care enter a closer dialogue with the next of kin about their situation, need for support and respite.



Last Updated: Monday 07 October 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche