Understanding the Lived Experience of Care for Older People with Dementia Living at Home

Background: Good quality care has been associated with practices underpinned by the principles of person-centred care (PCC) (NICE, 2019). According to Martyr et al (2018), comparable to people with other health-related conditions, people with dementia (PwD) have a right to the best quality of care. Yet, there are still challenges to implementing good quality care in many care settings. This is despite international and national policies indicating that optimum care for PwD should be informed by the principles of PCC, with interventions designed to support their personhood. Aims and objectives: The aims of the research were to: (1) identify, explore, and understand how PwD living at home experience formal and informal care across multiple care settings, from their perspective; (2) understand how care experiences accord with the principles and practices of person-centred care (PCC); (3) Explore the barriers and facilitators to providing PCC for PwD. Understanding PwD's care experiences may help to create conditions whereby PCC for PwD can be enhanced, and in so doing, improve their everyday lives. Methodology: A qualitative interview study using the Interpretative Phenomenological Analysis (IPA) approach was used to explore lived experiences of care. Semi-structured interviews with PwD were undertaken over the telephone or by MS Teams to explore the experiences of PwD that were receiving or had received formal and informal health and social care provision. The Interpretative IPA approach was used as a methodology to explore and understand the meaning of these experiences. The data was analysed using an idiographic, case-by-case approach consistent with IPA, followed by an in-depth IPA analysis across the sample. McCormack and McCance’s (2017) PCC components were then used to explore how far principles of PCC were reflected in the dataset, including issues of the person’s beliefs and values; choice and autonomy; shared decision-making; empathy and compassion; involvement in care. Participants: Eight PwD living at home in the community were recruited via Join Dementia Research (JDR) and interviewed on one to two occasions. Participants were aged 65 years and older, living at home with mild to moderate dementia. Findings: Analysis of the transitional stage of becoming a person with dementia identified three subordinate themes which included participants recalling their symptoms prior to diagnosis; their experiences of care during the process of diagnosis; and the impact that the diagnosis had upon their identity. Analysis of being a person with dementia identified three subordinate themes which included participants experiencing personal struggles in trying to relieve the burden of care on informal carers; the effect of having dementia upon their identity as an older person requiring care; and their thoughts, feelings, and plans about their future care needs. Discussion: The study concludes with a discussion of the current findings in relation to existing literature and suggests new understandings of care in dementia, particularly highlighting the voice of PwD. These understandings consist of inclusive care where the voice of PwD confirmed them as unique individuals who were also able to self-care and be care-givers. PCC for PwD also highlights the importance for them in maintaining a sense of normalcy in the caring relationships and the preservation of their self-identity. Consideration is also given to the research design, alongside the strengths and limitations of the research. The wider implications of the research for policy and practice are then discussed with recommendations for achieving quality care for PwD. These recommendations include the dignifying of care for PwD by situating them within their unique cultural, historical, and social perspectives. Keywords: People with Dementia (PwD), Becoming, Being, Voices, Care, Experiences, Interpretative Phenomenological Analysis (IPA).