The Role of the Home Environment in Dementia Care and Support: Systematic review of Qualitative Research

Abstract

Background The domestic home is the preferred site for care provision for people with dementia and their families, therefore creating a dementia and caring friendly home environment is crucial. This systematic review synthesised qualitative studies to explore the role of the home environment and identify potential barriers and facilitators in home dementia care and support to inform future practice and research. Methods A systematic search in 12 databases identified international qualitative literature on perceptions and experiences of community-dwelling people with dementia, family and formal carers regarding the role of the home environment and ways to tackle daily challenges. Results Forty qualitative studies were included and analysed using thematic synthesis. The main three themes were: 'home as a paradox', 'there is no magic formula' and 'adapting the physical space, objects and behaviour'. Findings indicate that home is an important setting and is likely to change significantly responding to the changing nature of dementia. Themes were later validated by family carers of people with dementia. Conclusions The home environment is an important setting for care and needs to remain flexible to accommodate changes and challenges. Family carers and people with dementia implement and often improvise, various environmental strategies. Continuous and tailor-made support at home is required.

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

“…Stakeholders agreed that a person-centred approach prioritising the inherent value of all people with dementia, seeking to uphold rights and promote abilities was important. Professionals often perceived such an approach as being relatively straightforward, while family carers and people living with dementia pointed to a myriad of ethical and practical dilemmas [21,23]. For family carers these dilemmas often linked to the perceived safety of their relative and the family carer's sense of personal responsibility.…”

“…For people living with dementia, there can be a tension between independence as an expression of autonomy [20,21] and interdependence enabling people with dementia to remain in their own homes and communities [13]. Qualitative research has explored the ethical dilemmas faced by family carers and professionals in promoting the dignity and autonomy of people living with dementia [21,22] and deciding how best to adapt the home environment to facilitate independence [23]. Less is known about how people living with dementia, family carer and professional perspectives differ.…”

Exploring the meaning of home for family caregivers of people with dementia

“…Although the significance of the physical domestic environment is unquestionable (Gitlin, Liebman, & Winter, 2003;Shaw, 2004;Soilemezi, Drahota, Crossland, & Stores, 2017), its meaning and role remain empirically under-studied. Aminzadeh and colleagues (2010) suggested that home adaptations or restrictions result in disorder or intrusion, and change the emotional meaning of home for people with dementia.…”

Protocol for the SAFEST review: the Shock-Absorbing Flooring Effectiveness SysTematic review including older adults and staff in hospitals and care homes

“…Studies will be critically assessed using the Joanna Briggs Institute’s critical appraisal tool 64. We will follow the data collection process as above, and use QSR NVivo software for data analysis 65…”