Exploring the Support Needs of Family Carers of People Nearing the End of Life with Dementia: A Qualitative Study Using Principles of Grounded Theory

Abstract

Background: A substantial amount of care for people nearing the end of life with dementia is provided by their relatives or friends on an informal, unpaid basis. Caring for a person with dementia at this later stage of their condition can have a detrimental impact on family carers and they may resultantly develop support needs. Little research has been conducted relating to the support needs family carers can possess at the time their relative or friend with dementia nears the end of life and there is an absence of evidence exploring how effectively Admiral nurses and district nurses address these carers self-perceived support needs. Aims: To gain further understanding of the support needs of family carers of people with dementia nearing the end of life. To consider the relationship between the support these carers believe can address their needs and the actual support they receive from Admiral nurses and district nurses. To explore factors that stop these family carers obtaining appropriate support. Methods: A qualitative thematic analysis of transcripts from semi-structured interviews with 29 family carer participants, six Admiral nurse participants and 15 district nurse participants, using principles of grounded theory methodology. Results: As their relative or friend with dementia nears the end of life, family carers develop support needs that adversely impact on their physical and psychosocial wellbeing. Evidence from this study indicates that family carer needs can be lessened with timely supportive input from Admiral nurses and district nurses that helps them feel prepared and in control, that strengthens their interpersonal relationships, that makes physical caregiving easier, that increases their visibility and value and that prioritises their personal wellbeing. Conclusions : This study contributes to knowledge by presenting a thematic analysis that aids understanding of the support needs family carers can possess as their relative or friend with dementia nears the end of life. Family carer wellbeing needs can be addressed effectively with recurrent assessment and individualised support from Admiral nurses and district nurses. It is hoped this study will inform Admiral nurse and district nurse practitioners approach to palliative care delivery.

Date of Award	25 Jul 2022
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Helen Pusey (Co Supervisor) & John Keady (Main Supervisor)