The variables retained for inclusion in each domain through univariable multivariate modelling are summarized in Table 3. Full details of the stages of modelling are provided in Supplementary Table 2 (Supplemental Digital Content 1, http://links.lww.com/WAD/A211).
In the final model, following multiple imputation analysis and with adjustment, psychological characteristics and psychological health was most strongly related to “living well” (2.53; 95% CI, 2.08-2.97), followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00), and relationship (−0.22; 95% CI, −0.41 to −0.03) had smaller but still significant associations. Social location (0.28; 95% CI, −0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, −0.15 to 0.28) were not significantly associated with “living well”. A visual representation of the model is presented in Figure 1, and further detail is provided in Supplementary Table 3 (Supplemental Digital Content 1, http://links.lww.com/WAD/A211).
We have presented a comprehensive model of factors associated with “living well” for a large sample of 1283 caregivers of people with mild-to-moderate dementia, drawn from socially and environmentally diverse areas of Great Britain. This analysis uniquely combined 48 individual predictor variables to derive 7 latent factors reflecting key domains of the caregiving experience, and 3 outcome variables to derive a single “living well” factor, in order to create a model demonstrating the significant associations with “living well” and the relative strength of these associations. The model indicates that caregivers’ psychological characteristics and psychological health are most strongly associated with subjective perceptions of “living well,” while their physical fitness and physical health, and their experience of caregiving, also demonstrate important associations. Social capitals, assets and resources play a more limited but still important role. Social class and perceived social status are not associated with whether or not the caregiver is “living well.” Current relationship with the person with dementia, again, plays a limited though still important role, while dementia-related problems reflected in perceptions of neuropsychiatric symptoms are not associated with “living well.” These findings provide a more integrated understanding of influences on outcomes for caregivers than hitherto available.
Alongside these personal characteristics, we focused on the social capitals, assets and resources that were available to the caregivers in our sample. The final model included frequency of social contact, availability of resources within the caregiver’s social network that could be called upon to address particular needs, and civic participation. Caregivers’ perceptions of social support have been identified previously as important for QoL, satisfaction with life and well-being.12,41,42 A recent review found no clear association with QoL,21 but this was based on data from only 2 studies. Our more comprehensive examination of the role of social capitals, assets and resources, in the form of social support and civic participation, reinforces the finding that social support plays an important role in enabling carers to live well.
Two of 7 domains covered in our modelling did not show significant associations with living well. One of these, managing everyday life with dementia, reflected perceived severity of and distress at neuropsychiatric symptoms. Farina et al21 found that the relationship between presence of behavioral and psychological symptoms in the person with dementia and caregiver QoL was unclear, with only about half of the included studies finding an association. The IDEAL cohort included participants who, at baseline, had mild-to-moderate dementia and were living in the community; hence, levels of neuropsychiatric symptoms may have been relatively low, precluding the possibility of finding an association between perceptions of these and outcomes for caregivers, should such an association exist. The other, social location, considered demographic characteristics of the caregiver and our modelling included an objective assessment of socioeconomic status as well as the caregiver’s own perceptions of status in relation to others, and in the community and wider society. The final model included only the caregiver’s perceptions and found no association with “living well”. Similarly, Farina et al21 found no strong evidence with regard to associations between demographic characteristics of the caregiver and caregiver QoL.
There are a number of limitations to this study that must be acknowledged. Our data are based largely on self-report, and while this is valuable in capturing caregivers’ perceptions of their own situation and experience, inclusion of objective measures might strengthen the analysis. The analysis is based on cross-sectional data and causal direction cannot be inferred. Selection of variables was necessary in developing the model, and while the variables remaining were those with clear domain-specific relationships, some small effects may have been omitted in the final modelling stage. The participating caregivers were providing care and support to people with mild-to-moderate dementia living in the community, and associations may be different for caregivers of people who have more advanced dementia or who are receiving institutional care. The analysis included all participating caregivers and adjusted for the relationship to the person with dementia. However, the majority of caregivers were spouses or partners, and their experiences may differ from those of adult children or other family members or friends providing care. We were unable to consider cultural and ethnic differences as the sample consisted almost entirely of white British individuals. Caregivers from black and minority ethnic groups may be less likely to access health services and related support17 and hence are important to consider.44 Our model incorporating 7 domains of experience was developed through consensus of the research team, and reviewed with our ALWAYs group of experts by experience. We acknowledge that while the majority of measures can be readily allocated to a specific domain, there are some measures where opinions could differ on the most appropriate grouping. Future research might test this or similar models with different groups of caregivers. It would also be valuable to examine whether associations persist when examined longitudinally. Changes might be expected, for example, where social support42 or closeness in the relationship43 decline, neuropsychiatric symptoms increase in number and severity, or the person with dementia moves into institutional care.6 Further waves of follow-up in IDEAL will provide this longitudinal perspective.
The model presented here indicates key predictors of caregivers’ capability to “live well”, comprising evaluations of QoL, satisfaction with life and well-being. This builds on previous research to provide a template for conceptualizing the elements that should be included when considering how best to support caregivers of people with mild-to-moderate dementia living in the community. Optimizing mental and physical health is vital. Beyond this, understanding the profile of psychological characteristics and how this influences each caregiver’s experience would make it possible to target support more precisely to those caregivers who would most benefit from it. This would include encouraging the development of effective coping strategies. Similarly, understanding the nature of each caregiver’s social networks and resources and how these change over time42 would highlight ways in which information and support could be augmented in order to meet important needs for connection with others45 and alleviate negative impacts of caregiving.
In conclusion, these findings present new evidence about the relative impact of different aspects of the experience of caregivers of community-dwelling individuals with mild to moderate dementia on caregivers’ QoL, satisfaction with life and well-being, incorporating a wider range of potential predictor variables than previously considered. The findings demonstrate the importance of supporting caregivers’ psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling caregivers to maintain vital social capitals, assets and resources. Greater understanding of the contribution of these domains of experience to caregivers’ capability to “live well” will help to inform policy discussions and decisions about health and social care provision, so as to enhance the support available to caregivers of people with dementia.
We are grateful to the 3 UK research networks, the NIHR Clinical Research Network in England, the Scottish Dementia Network (SDN), and Health and Care Research Wales, for supporting the study. Also, the support of the ESRC is acknowledged. We thank the local principal investigators and staff at our NHS sites, the IDEAL study participants and their families, the members of the ALWAYs group, including members of the Alzheimer’s Society Research Network, and Dr Nori Graham and members of the Project Advisory Group. We are grateful to Nada Savitch for setting up and early facilitation of the ALWAYs group.
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