Family Caregiving in Dementia

Alzheimer’s disease and related dementias are a major health problem. Currently, there are 5.3 million people with Alzheimer’s disease in the U.S. This number is expected to grow significantly as the baby-boomer generation enters old age, with estimates that 7.7 million people will be affected by 2030. It is estimated that 65 to 75% of dementia patients are cared for at home by family members, including both spouses and adult children.¹ According to the 2010 Alzheimer’s Association Facts and Figures report, 10.9 million Americans provide unpaid care for persons with dementia. They are involved in 12.5 billion hours of care per year, which is valued at almost $144 million. In Rhode Island, it is estimated that 39,138 individuals are providing about 44 million hours of care per year.

Providing care for an individual with dementia is extremely stressful and has far-reaching consequences. Because dementia involves relentless cognitive deterioration, family caregivers have to manage changing demands and unexpected problem behaviors. Caregivers often sacrifice their own needs and well-being to provide care for their loved one. The distress experienced by dementia caregivers is typically referred to as caregiver burden, which includes both objective aspects of providing care (e.g., time and physical aspects of providing caregiver) and subjective experience of caregiving (e.g., perceptions and emotional reactions to caregiving). Although there are strong correlations between caregiver burden and depression, they are not necessarily the same construct.² Our view is that caregiver burden represents a stressor that if not ameliorated will lead to mental health consequences such as depression. In this article, I will review the consequences of caring for an individual with dementia, briefly discuss theoretical models of caregiver stress, highlight the current state of the literature on psychosocial interventions for dementia caregivers, and identify future directions for dementia caregiver research.

Mental Health Consequences of Dementia Caregiving

Dementia caregiving is associated with a variety of negative mental health consequences. There is evidence that providing care for an individual with dementia is more stressful than caring for a physically-impaired older adult.³ Dementia caregivers report high levels of depression and anxiety and exhibit elevated rates of mood disorders, with about 1/3 of individuals meeting diagnostic criteria for depression.⁴ Correlates of depression and other aspects of distress in caregivers include care recipient behavior problems, severity of cognitive and functional impairment, more hours providing care, greater number of caregiving tasks, and longer duration of caregiving.^{3, 5} Our group has also shown that unsatisfying prior relationships and poor family functioning are associated with greater reactivity to memory and behavior problems and less burden compared to individuals with satisfying pre-dementia relationships.^{6, 7} There are also moderating factors, including greater distress in spousal caregivers, older caregivers, female caregivers, and in individuals with less social support.³ Given the strong relationship between care recipient behavior problems and caregiver distress, it is no surprise that caregivers of individuals with frontotemporal dementia (a condition characterized by behavioral abnormalities) report higher levels of distress than caregivers of individuals with Alzheimer’s disease.⁸ Similarly, early behavior problems specific to Lewy Body Dementia (e.g., hallucinations, delusions, sleep disturbance) are strongly related to caregiver strain.⁹ Even in non-demented individuals with Parkinson’s disease, there is evidence that cognitive and mood symptoms are more strongly related to caregiver strain and depression than motor symptoms. ¹⁰ Recent evidence suggests that perceptions of patient sufferring are predictive of caregiver depression and anitdepressant use, independent of patient characteristics, patient behavior problems, and the amount of time caring for the patient.¹¹ There continues to be some uncertainty about whether long-term caregiving is associated with increased risk for problems or some degree of adaptation. Recently, our group has shown that persisting high levels of burden are associated with a subsequent increase in depressive symptoms.² Caregivers with greater depression and burden leading up to and during the end-of-life period are at increased risk of prolonged grief (see Tuya Fulton and Epstein-Lubow in this volume).

Physical Health Consequences of Dementia Caregiving

Providing caring for an individual with dementia can also lead to increased risk for physical health problems, both in terms of perceived health and more objective health measures.^{3, 12} It is proposed that the chronic stress associated with dementia caregiving may negatively impact immunologic and hormonal functioning thereby increasing susceptibility to illness. Furthermore, there is evidence that dementia caregivers neglect their own health, such as not getting enough sleep and having poor nutrition, which places them at heightened risk for illness.¹² Predictors of poor health among dementia caregivers include behavior problems and cognitive impairment in the care recipient, longer duration of caregiving, low SES and education, receipt of less informal support, older age, not being a spouse, co-residence with the care recipient, and high levels of depression/burden.¹³ Furthermore, female caregivers and minority caregivers report poorer health than male caregivers and Caucasian caregivers.¹⁴

There have been several dramatic findings related to the health of caregivers, including death and development of their own cognitive impairment. Schulz and Beach¹⁵ showed that caregiving was an independent risk factor for mortality, with caregivers experiencing a 63% increase risk of death over 4 years compared to non-caregivers. Similarly, spousal caregivers of individuals with dementia had a higher mortality rate after hospitalization of their spouse than spousal caregivers of individuals hospitalized for reasons not related to dementia.¹⁶ Finally, recent epidemiological data show a six-fold increased risk of dementia in spousal dementia caregivers compared to non-caregivers.¹⁷

Positive Aspects of Dementia Caregiving

Although there has been a great deal of focus on the negative consequences of dementia caregiving, there is a growing literature on positive aspects of providing care. It should be noted that not all caregivers experience distress and burden, especially very early in the caregiving process.¹⁸ In addition, there is evidence that length of caregiving may result in stability or decreases in burden and may increase time to nursing home placement, suggesting adaptation to the caregiving role.¹⁹ Most caregivers report some degree of satisfaction with providing care, including feeling needed and useful, feeling good about oneself, learning new skills, developing a positive attitude and appreciation for life, and strengthening relationships with others.²⁰ Positive aspects of caregiving are inversely related to burden and depression and have the potential to buffer against negative consequences of caregiving.²¹ Caregiver personality characteristics such as extroversion and agreeableness along with social support (especially from one’s spouse/partner) are associated with higher reports of postive aspects of caregiving.²²

Theoretical Model of Caregiver Stress

Dementia caregiving often serves as the model for studying the effects of chronic stress on individual’s mental and physical health. The most common theoretical model applied to stress experienced by dementia caregivers is Lazarus and Folkman’s transactional stress and coping model.²³ This model posits that situations or experiences are not inherently stressful but are experienced as stressful after a two-stage appraisal process by the individual. Initial appraisals are influenced by background, past experiences, culture/ethnicity, and personality. Secondary appraisals involve deciding whether an individual is capable of managing the stress and selection of a coping strategy. This secondary process is more situation-dependent than the initial appraisal and is generally the target of interventions. Among dementia caregivers, there is evidence that active coping strategies lead to lower levels of distress than avoidant coping.

Interventions for Dementia Caregivers

There is an extensive literature showing that psychosocial interventions can reduce the negative consequences for familiy caregivers of individuals with dementia.²⁴ Many intervention studies are plagued by methodological problems, such as small sample sizes and inclusion of non-distressed caregivers. Characteristics of effective interventions include being psychotherapeutic, muticomponent, tailored to the specific needs of the caregiver, and of adequate duration.²⁵ Interventions that have more generic educational components tend to increase caregivers’ knowledge about dementia, although they have less significant impact on caregiver distress and burden.²⁶ Adding a psychotherapeutic component may help caregivers apply strategies learned in the intervention and/or address barriers to making changes. Because caregiver burden and distress is a complex, multifaceted construct, it is no surprise that multicomponent interventions seem to be more effective than interventions targeting one aspect of caregiver functioning.²⁶ Similarly, fixed interventions are less efficacious than those tailored to caregivers specific needs. In the recent multisite REACH-II study, caregivers completed a risk appraisal measure to assess domains related to poor caregiver outcomes (i.e., depression, burden, self-care, health behaviors, social support, safety, and patient problem behaviors) and to guide intervention implementation.²⁴ Meta-analytic studies have also shown that interventions of 6 months or greater are more effective than briefer interventions.²⁷ In addition to caregiver burden, distress, and depression, several multicomponent interventions have shown effects on physical health, service utilization, and delayed institutionalization.²⁸ In a large multicomponent, intervention study involving equal numbers of Caucasian, Latino, and Afrcian-American caregivers, intervention effects were seen for Caucasian and Latino caregivers, but not for African-Americans.²⁴ Finally, very few studies have addressed long-term outcomes of interventions, although there is limited evidence that positive effects of a caregiver intervention can be sustained.²⁹ Overall, comprehensive caregiver interventions involving regular, individualized contact with a counselor/social worker delivered over an extended period have resulted in reduced caregiver distress compared to control conditions.

In response to the need for cost-effective and highly accessible dementia caregiver interventions, our research group developed a telephone-based, psychosocial intervention for dementia caregivers that is theoretically driven by a model of family functioning and the traditional stress-coping model (Family Intervention:Telephone Tracking – Caregiver; FITT-C). The FITT-C involves 16 telephone contacts over a 6-month period. Each call involves an assessment of key areas (i.e., social support, mood, family functioning, health) to allow therapists to set treatment priorities and to select the most appropriate intervention strategies. The therapist selects from a menu of directive and supportive intervention strategies to address the most pressing issues. In a preliminary study of an earlier version of intervention, we found that dementia caregivers who received the FITT showed greater reductions in perceived burden and less-severe reactions to memory and behavior problems than individuals in a standard care condition.³⁰ We are currently conducting a large-scale, randomized controlled study comparing the FITT-C to the an active control condition involving non-directive support for caregivers through empathic and reflective listening and open-ended questioning.

Conclusions and Future Directions

This brief review highlighted the significant mental health and physical consequences of providing care to an individual with dementia. These include increased rates of depression and serious medical risks and death. Future research is needed to understand the mechanisms that underlie the changes, especially those related to physical health effects. Although many caregivers experience burden and stress, there is increasing recognition about positive effects of caregiving, which may serve to buffer caregivers against negative consequences. Future research should identify methods and interventions for enhancing positive aspects of caregiving. Several large-scale, multi-component intervention studies have demonstrated beneficial effects for dementia caregivers, including reduced burden and depression and delayed institutionalization of care recipients. Few interventions have been tested for long-term outcomes and interventions are not necessarily effective for all individuals. It is anticipated that interventions tailored to individual caregiver’s needs may result in even better outcomes. Overall, considerable progress has been made in demonstrating the serious consequences of caring for someone with dementia and developing strategies to reduce the physical and emotional burden of providing care.