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Table 4 Table of themes and differences between stakeholder groups

From: “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

Overarching themeSub themeStakeholder contributionNotable differences and tensions between stakeholder groups
PLWDFCHSCP
1.1. Being in a safe and familiar environment1.1 Adapting the environmentxxxFamily carers focus on reducing the risk of potential harm within the home vs PLWD and professionals promoting adaptations to enhance functioning at home and outside. Family carers want to support relatives to remain independent but fear negative consequences and may act to protect or reduce potential risk by imposing constraints. This negatively impacts on the independence of PLWD.
1.2 Balancing autonomy and minimising harmxxx
1.1.2. Enabling not disabling care2.1 Building on preserved abilities xxAll stakeholder groups described the importance of an ‘enabling’ approach and PLWD living well. As they would like, at home. Professionals have a clear idea of why and how this can be done however for family carers, this can be difficult to enact and requires them to tread a fine line and with a potentially disabling consequence for the PLWD.
2.2 Supporting without undermining xx
2.3 Families want to protect and carexxx
1.1.3. Maintaining relationships and community connectedness3.1 Making a contribution vs not being a burdenxxxHaving varied and positive relationships both within and outside of the family and home was promoted across groups. PLWD described the impact of dementia and the stigma connected to the disease as barriers to staying connected and feeling useful, whereas families described the complexities both practically and emotionally of supporting relatives to stay connected. The impact of dementia itself and the consequence of having to do more for relatives left family members and PLWD describing negative changes in their relationships and roles. Professionals acknowledged and could account for these changes but not what to do about them.
3.2 Getting out and aboutxxx
3.3 Changing roles and relationshipsxxx
1.1.4. Getting the right support4.1 Difficulties in accessing services x All stakeholders felt that formal and informal support network were important but for family members, they were often caught between trying to navigate often inaccessible services and their relative’s reluctance to accept additional support. PLWD described how accepting additional support could undermine their independence and they worried about burden on their relatives. Professionals, although recognising their role in addressing different needs of carers and PLWD, frequently described trying to educate or persuade the carer about how best to respond.
4.2 Balancing different needs xx
4.3 Reluctance to accept supportxxx
  1. PLWD People living with dementia, FC Family carers, HSCP Health and social care professionals