Everyday Decisions in Care Homes: Understanding and Facilitating the Involvement of People Living With Dementia and Communication Difficulties Through Appreciative Inquiry

Background - Approximately 70% of the 457,000 people living in UK care homes are thought to have dementia or significant memory problems. This may mean that they need additional support with everyday decisions about their life and care. However, little is known about how people living with dementia and associated communication difficulties make and share decisions about issues that matter to them in care homes. Methods - A systematic review of studies designed to measure, implement or explore shared everyday decision-making with cognitively impaired adults in care homes in the last 20 years was completed to identify gaps in the evidence. Studies focusing on advance decisions were excluded. Findings from the review provided the context for a modified 4D cycle of Appreciative Inquiry (AI) that was designed to engage participants in two care homes in England through observation, interviews and focus groups. Observations and participant stories of decision-making interactions were used to identify how participants could enhance shared everyday decision-making between people living with dementia and their staff and family care partners. Ethical approval reference number: 226515. Results – The systematic review, found evidence from 19 studies, that people living with dementia like to remain involved in the decisions about their care, but that their capacity to participate and the importance of supporting this is underestimated by staff and family care partners. Participants in the AI study (15 people living with dementia and communication difficulties, 24 care staff and four family care partners) were observed for a total of 72 hours and completed 13 focus groups and 26 interviews. They demonstrated that people living with dementia and communication difficulties were regularly making and sharing everyday decisions in 20 different areas. The majority of decisions that were effectively shared entailed binary choices based on residents’ preferences about food and drink, physical and social activities and aspects of personal care. In addition, there were complex decisions shared with multiple staff and family care partners over extended time periods that relied on people knowing and understanding each other well. Individuals’ communication difficulties, and understanding of what shared everyday decision-making could encompass, affected how they experienced and contributed to the process. Maximising shared everyday decision-making relied on participants engaging with six activities; encouragement, communication that recognised the individual needs of the resident, offering and making choices, effective uses of time and the environment, and identifying an appropriate decision partner. Ideas arising from the AI cycle that were implemented drew mainly on ideas based on participants’ stories and experiences rather than evidence from the observational data or the review. Adjustments in practice included; the presentation of food and information in a more accessible manner to support meaningful choices, a post box as an opportunity to increase written communications between residents and their care partners, new meetings between residents’ and staff and 1:1 time with activity staff. The modified 4D cycle of AI was an effective research approach that promoted a high level of engagement, with all participant groups contributing to the development and implementation of interventions to enhance shared everyday decision-making in the care homes. Conclusion – Everyday decisions are commonly made and shared by people living with dementia and communication difficulties in care homes. When care home staff prioritise processes which promote the use of multiple senses to maximise residents’ involvement, it is possible to challenge routine and advance personalised approaches to care within everyday encounters. Appreciative inquiry provided a structure for people living with dementia and their staff and family care partners to recognise and share good practice as the basis for small, efficient cultural and practical changes aligned with the needs of the individuals and systems related to shared decision-making in care homes. Additional work is needed to focus on specific areas of everyday decision-making in communal care settings where there is potential to further develop engagement between residents and their staff and family care partners to extend their partnerships in the planning and delivery of care and organisational decisions.