Abstract
BackgroundAfter diagnosis of a dementing illness, patients and their spouses have many concerns related to the disease and their future. This often leads to poor psychological well-being and reduced health-related quality of life (HRQoL) of the family. Support for self-management skills has been proven to be an effective method to improve prognosis of asthma, heart failure and osteoarthritis. However, self-management interventions have not been studied in dementia. Therefore, our aim was to examine, in an objective-oriented group intervention, the efficacy of self-management support program (SMP) on the HRQoL of dementia patients and their spousal caregivers as well as on the sense of competence and psychological well-being of caregivers.MethodsDuring the years 2011 to 12, 160 dementia patients and their spouses will be recruited from memory clinics and randomized into two arms: 80 patients for group-based SMP sessions including topics selected by the participants, 80 patients will serve as controls in usual community care. Sessions may include topics on dementia, community services, active lifestyle and prevention for cognitive decline, spousal relationship, future planning and emotional well-being. The patients and spouses will have their separate group sessions (ten participants per group) once a week for eight weeks. Main outcome measures will be patients’ HRQoL (15D) and spousal caregivers’ HRQoL (RAND-36), and sense of competence (SCQ). Secondary measures will be caregivers’ psychological well-being (GHQ-12) and coping resources, patients’ depression, cognition and signs of frailty. Data concerning admissions to institutional care and the use and costs of health and social services will be collected during a two-year follow-up.DiscussionThis is a ‘proof-of-concept’ study to explore the efficacy of group support for self-management skills among dementia families. It will also provide data on cost-effectiveness of the intervention.Trial registrationACTRN12611001173987
Highlights
After diagnosis of a dementing illness, patients and their spouses have many concerns related to the disease and their future
Dementia patients wish to live at home as far as possible and the spousal caregivers are in the key role in enabling it
We study the effects of intervention on the use and costs of health care services, dementia patients' time to be at home and mortality
Summary
After diagnosis of a dementing illness, patients and their spouses have many concerns related to the disease and their future. Our aim was to examine, in an objective-oriented group intervention, the efficacy of self-management support program (SMP) on the HRQoL of dementia patients and their spousal caregivers as well as on the sense of competence and psychological well-being of caregivers. Cognitive disorders, such as Alzheimer disease, gradually leading to the dementia syndrome are the most important chronic illness group leading to increased need for assistance, disability and institutional care among older people [1]. Many psychosocial studies demonstrate that individuals can be supported to maintain their skills and build resilience [4,7,8]
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