Burden in primary caregivers of people with dementia: a clinical-empirical exploration of its determinants and treatment

The majority of people with dementia in the early stages are home-dwelling and being cared for by relatives, mostly spouses or adult children. The need for support for a person with dementia can be considerable and informal caregivers run an increased risk of burden. Several factors influence the experienced burden. This study was a secondary analysis of a previously conducted RCT into the effectiveness of the programme Integrative Reactivation and Rehabilitation (IRR) provided in a nursing home for people in an early stage of dementia and their caregivers, comparing IRR to usual nursing home care. We conducted a systematic review of determinant models of caregiver burden, using quantitative outcome measures of burden or burden-related concepts, like mental health and depression. We selected models that included both person with dementia and caregiver variables. We found the person with dementia’s behavioural problems are consistently reported as important determinants of caregiver burden, depression, and mental health and they outweigh cognitive disorders or lack of self-care. Caregiver resources, for example, personality traits, coping styles, and competences, can be considered mediators between the impact of behavioral problems and caregiver burden, depression and mental health. Feeling competent or enjoying higher self-efficacy diminish caregiver burden. In the clinical study, we measured the number of care tasks (objective burden), general burden, and emotional distress (both subjective burden) and found that in general and across time, there was a moderate to high correlation between general burden and emotional distress. The relationship between these measures and the objective burden proved insignificant or low. In the long term, general burden appeared to be susceptible to treatment. We identified patterns of patient and caregiver determinants of caregiver burden and emotional distress over time. Both general burden and emotional distress appeared to be more related to neuropsychiatric symptoms of the person with dementia than to cognitive function disorders or lack of self-care. The more severe the neuropsychiatric symptoms, the higher the experienced burden. Equally important for both general burden and emotional distress over time was caregiver sense of competence: caregivers who felt less competent experienced higher levels of burden. A low rated health-related quality of life of the caregiver determined general burden, but not emotional distress. High affiliation determined emotional distress. We investigated what changes in caregivers, which caregiver characteristics respectively, predict recovery from burden over time, and if treatment makes a difference. We found that caregivers with an improved sense of competence who care for persons with dementia in whom the severity of neuropsychiatric symptoms has decreased, had the highest chance of recovering from burden. The number of improved caregivers was significantly higher in the condition IRR than in usual care. Considering the role of the improved sense of competence in the profile of the recovered caregiver, the personality trait ‘feeling highly affiliated’ gave a slightly lower chance of improvement for the whole group of caregivers in the short term. We reviewed the literature on combined psychosocial intervention programmes for both people with dementia and their caregivers targeting specific determinants of burden that emerged from our research as being susceptible to intervention. Caregiver sense of competence, the self-perception of interpersonal behaviour, as well as the person with dementia’s neuropsychiatric symptoms, emerged as main determinants of subjective burden, whereas sense of competence and neuropsychiatric symptoms appeared to be susceptible to intervention. Caregivers’ sense of competence, self-efficacy or coping were mediators of the effects on burden and psychological well-being. Several studies showed that caregiver sense of competence, self-efficacy and coping can be improved or changed on their own and personalised or multi-component programmes appear to have the most beneficial effects