Many studies have shown that family members who take care of relatives with dementia at home see the experience as stressful and frustrating. There is also a term for this and that term is caregiver burden (CB). Research has shown that more than 80% of Alzheimer’s disease caregivers have indicated that they frequently experience high levels of stress and about 50% of caregivers has said that they suffer from depression. Studies have shown that caregiver burden is associated with poor outcomes for caregivers, like decreased quality of life and depression. Caregiver burden is also associated with poor outcomes for dementia patients, like poor quality of life and early nursing home placement. Researchers have also agreed on a definition of caregiver burden and they decided that the term refers to a multidimensional response to psychological, emotional, social, physical and financial stressors that are associated with the caregiving experience. This term is different than the term ‘caregiving’, which only refers to the activities involved in providing help to relatives who can’t provide for themselves. This does not include the psychological distress that may come from it. Caregiver burden comes from the caregiver’s perception of activities and stressors and it is influenced by different psychosocial factors, like kinship, culture and the social environment.

The problem

It seems that caregiving for people with dementia is a global issue, because there’s a worldwide demographic shift to an aging population. People over the world have dementia. The caregiving responsibility will largely fall on family caregivers, like husbands and wives, but other family members are also seen more and more in these roles (like children). In the United States, 80% of the in-home care needed by persons with dementia is given by family members. When the severity of dementia increases, the amount of time needed to take care of the person also increases. So it is quite essential to identify and reduce important healthcare issues. A link has been found between earlier nursing home placement for people with dementia and caregiver burden. Caregivers who sought nursing home placement for the patient had higher burden scores, decreased social support and more family dysfunction than caregivers who did not seek nursing home placement. There are also other characteristics associated with nursing home placement and these are female, not living in the same household and no religious practice. Research has also found that adult children caregivers initiate early nursing home practice compared to spouse caregivers.

Caregiver characteristics

Many studies have examined caregiver characteristics that influence caregiver burden. One study found that wives experienced higher levels of caregiver burden compared to other relatives. This has been supported, but there were also studies that have found that daughters were overrepresented in the high caregiver burden group. A recent study has found that there are no significant differences in caregiver burden between adult children and spouses. It seems that closer kinship ties are associated with increased caregiver burden. Research has also shown that gender is an influence on kinship roles and perceptions of caregiver burden. Researchers have found that women report more health problems and depressive symptoms than male caregivers. However, there is also a study that did not find a difference between gender and measures of caregiver burden. One study did find that there are differences in the experience of caregiver burden. Male caregivers tend to experience a lack of positive outlooks and a lack of social support and female caregivers tend to experience an increase in the caregiver burden in their relationships with other relatives and also an increase in their own health problems. Other studies have found that coping strategies influence caregivers’ perceptions of caregiver burden. People with an emotion-focused coping strategy deal with feelings associated with the strain and people with problem-focused coping strategies try to confront the reality of the strain by dealing with the tangible consequences. It has been found that women reported more emotion-focused coping and men more problem-focused or mixed coping strategies to be effective.

It has also been found that self-efficacy behaviours may influence coping strategies when it comes to caregiver burden. Studies have found that caregivers who reported a stronger self-efficacy and who took time for themselves had a decreased burden and a greater quality of life. Culture also has an influence on this subject. This is because cultures shape a person’s perception of familial responsibilities and therefore also influence caregiver burden. Caregiver distress may be expressed differently among people from different cultures. Studies have found that Caucasian caregivers reported greater depression and saw caregiving as more stressful than African American caregivers. According to those studies, African American caregivers experienced almost the same amount of caregiver burden but they express it differently than Caucasian caregivers. In most Asian cultures, people have a greater sense of responsibility to care for elderly relatives and they also have a reluctance to discuss family problems. This leads to less social and emotional support for the caregivers and research has found that dementia caregivers from Korea and China scored higher on depression and burden than caregivers in the Western world.

Patient characteristics

Research has shown that the behavioural disturbances of dementia patients are one of the biggest factors contributing to caregiver burden. There is a strong association between behaviours of aggression, night-time wandering and agitation with caregiver burden and symptoms of depression. Behaviours that create more physical stress on caregivers (incontinence, immobility and difficulty walking) were predictors of nursing home placement. Other studies have shown that caregivers of mobile demented patients reported higher amounts of caregiver burden because of behavioural disturbances than non-mobile patients. It seems that behavioural disturbances influence caregiver burden and it is therefore important to recognize these problems so that they can be assessed and addressed. Studies did not find a relationship between caregiver burden and the dementia patient’s cognitive abilities. Caregiver burden is also influenced by patients’ type of dementia. Appraisals of caregiver burden were different between caregivers of persons with Alzheimer’s disease compared with frontotemporal dementia. It seems that caregivers of individuals with Alzheimer’s disease experience more disruption in their personal life than frontotemporal dementia caregivers and this last group is less satisfied with themselves as caregivers than the first group.

Conflict

Studies have also shown that caregiving for a demented relative is associated with family conflict, limitations in social life and a decrease in social support. Family conflicts can arise because of various things. One of the reasons is the caregiving situation itself and another reason is the old unresolved family issues that spill over in the caregiver’s experience. This may result in inference with support people might otherwise receive. Research has found that caregivers need help, appreciation and encouragements for their caregiving in order to lessen the degree of caregiver burden. Conflict in the family is associated with caregiver depression. Also, as cognitive impairment increases, caregivers view the family as more conflictual and less adaptable. Caregivers with prior good family functioning have less burden than caregivers with poor family functioning.

Assessment and interventions

Assessment of the degree of burden is important. There are different tools that assess the degree of burden. Some of these are the Zarit Burden Interview, the Screen for Caregiver Burden and the Caregiver Strain Index. These are all questionnaires. Assessment is not the only thing, it is also important to reduce caregiver burden. This is important for the dementia patients as well as the caregiver. When a caregiver receives emotional support and support in their physical health and can deal with the care of their relative with dementia, nursing home placement can be delayed. This will reduce the costs of long-term care significantly. Studies have shown that caregivers who changed certain things in their environments, like installing assistive devices in the bathroom, were less likely to institutionalize their family members with dementia. So it’s a good idea to educate caregivers on environmental changes. Older studies looked at single interventions and their effectiveness on reducing caregiver burden. One study found that a role-training intervention that focuses on helping the caregiver assimilate a more clinical belief set about their work as caregiver, resulted in less reported depression and burden. Programs that focused on family intervention by giving stress management, coping skills and education also reduced stress and depression among caregivers. These programs also reduce behaviour problems. Recent studies have found that multiple component interventions have better outcomes than single interventions.

Caregivers are different people and they all have different needs. We can’t assume that the same interventions will work among caregivers of various cultures. Research has shown that certain subgroups of caregivers responded less favourably to interventions than others. For example, in one study it was found that caregivers with a high school education or less responded more favourable to interventions than those with higher education. One study paired up dementia patients’ primary caregivers with nurse practitioners and the results showed that the patients showed an improvement in their behavioural and psychological symptoms and that the caregiver had less stress than the control group. It seems that various interventions have a positive immediate effect on caregivers’ burden. The broadest effects that have been found were from psychoeducational interventions that included the provision of information about caregiver issues and dementia. But, these interventions did not decrease the risk for institutionalization. Multi-component interventions (like education and support) were related to delayed institutionalization.

Nurse practitioners should address caregiver burden through prevention and early detection. Caregivers should be screened every six months and this helps to identify the caregivers who are at increased risk. When caregiver burden is identified, caregivers need to take part in active interventions. Good interventions give information about dementia, assist the family, get family members involved and gives information about safety issues. As dementia progresses, caregivers need more skill-based training to support the dementia patients. Of course, lessening the caregiver burden and delaying institutionalization in that way reduces the costs of long-term care.