Dementia Caregiver Interventions
Authors: Gitlin Laura N. 
Published: January 2024

The number of people living with dementia worldwide is estimated to be 55 million and is expected to increase to 78 million by 2030 andover 150 million by 2050. Families—defined broadly as relatives, fictive kin, neighbors, friends, relatives, and spouses—provide most of the long-term care throughout the disease trajectory. Family caregiving is a global phenomenon. Low- to middle-income countries in Latin America, Africa, and Asia are experiencing the most rapid increases in dementia, with the burden of care being particularly acute for extremely low-resourced families in these regions of the world.

Compared to caregiving for individuals with serious illnesses but who are not cognitively impaired, caregivers of people living with dementia provide more assistance with all aspects of care, oversee complex clinical symptoms, and must at some point in the disease process provide constant vigilance and extensive hands-on and physical care. The economic outlay of dementia caregiving is another differentiator, with families incurring approximately 70% of care costs. As care responsibilities increase with disease progression, caregivers need a wide range of supportive services to help them stay healthy themselves and also manage the complexities of the disease process and their elongated care responsibilities.

In response, a robust body of intervention studies has evolved during the past half-century. Although most research has emanated from the United States, research is emerging from other countries that either adapt and test existing evidence-based U.S. programs or develop and evaluate new intervention approaches tailored to the specific country and cultural group.

An appraisal of this expansive and growing research offers a “glass half full” and “glass half empty” perspective as to the level and depth of the evidence. On one hand and taken as a whole, this vast corpus of research has yielded evidence for a wide range of strategies, approaches, interventions, and programs demonstrating varying levels of effectiveness in supporting caregivers by increasing mastery and reducing depressive symptoms and care burdens. On the other hand, more methodological rigor in studies is needed along with the testing of interventions with diverse family caregivers that considers strength-based approaches (vs. symptom reduction only) and a wider range of outcomes such as supporting resilience, adaptation, and positive affect.

Despite evidence for many supportive approaches for caregivers, interventions with some level of evidence have not been widely disseminated, embedded in practice settings, nor sustained. Few families worldwide have access to proven supportive programs; few health professionals are aware of the evidence base; and most agencies, community-based programs, and health care systems do not have the infrastructure, staff capacities, or both to identify caregivers and provide disease education, support, care coordination, skills training, and other needed strategies shown to be helpful to families. This persistent “family care gap” between what is known to be effective and what is practiced in health care systems is one of the defining characteristics of this field of inquiry.