Everyday life and social relations in home-living patients with mild Alzheimer's disease and their caregivers: Quantitative and qualitative analyses

Everyday life and social relations in home-living patients with mild Alzheimer’s
disease (AD) and their caregivers: quantitative and qualitative analyses.
This PhD project was carried out between April 2004 and March 2007 during my
employment as project coordinator in the Memory Disorder Research Group, Department of Neurology, Neuroscience Centre, Copenhagen University Hospital, Rigshospitalet, Denmark, as part of the DAISY study.
The overarching objective of the PhD project was to investigate patients’ perspectives of the impact of mild AD on coping with everyday life and social relations, and the impact of a psychosocial intervention programme on patients and caregivers.
To meet the objective three studies were conducted: 1) to investigate social participation in patients with mild AD, and to analyse predictors of low social participation; 2) to analyse how patients with mild AD cope with the changes they face in relation to everyday life and social relations; and 3) to identify and analyse the experience of patients and their spousal caregivers concerning the impact of an intensive psychosocial intervention programme with tailored counselling, education courses and support groups, conducted in the mild phase of AD.
In the first study, social participation was assessed quantitatively in 330 patients with mild AD. Low social participation was found in 54.2% of the patients. Independent, significant predictors of low social participation compared to high social participation were: ADL impairment and the presence of neuropsychiatric symptoms.
In the second study, data were collected using semi-structured research interviews with 11 patients before their participation in the DAISY intervention programme. Grounded theory analysis of the interview data revealed that the basic social psychological problem faced by the patients was: their awareness of decline in personal dignity and value.
Coping strategies used to meet these problems were adaptations to the altered situation in order to maintain a feeling of well-being.
In the third study, data were collected using individual semi-structured research
interviews with 10 couples before and after the intervention programme. For the analysis, a template organising style of interpretation was used. Patients and caregivers found good support for coping with everyday life and social relations by participating in the intervention programme. Early counselling and support may improve patients and caregivers opportunities to adapt to the challenges of the progressive AD, and to maintain well-being.
The studies suggest that impaired social participation is an important aspect of deficits in mild AD; that the perspective of the patients should be taken into account when planning everyday life, psychosocial interventions, and care; and that early psychosocial intervention may offer important support to improve coping with everyday life and social relations in patients with mild AD and their caregivers.
Future studies should focus on the long-term perspective of social participation in AD patients and their caregivers, as well as the impact of AD on the dynamics of couples during the course of the disease.