A Path Forward for People Living with Dementia and Their Care Partners

Published In Aging in a Home Environment

About 6.2 million Americans who are 65 or older are living with dementia caused by Alzheimer’s disease. About two-thirds of those individuals are women. Almost three-quarters of people with dementia are age 75 or older. The CDC estimates that 14 million Americans will suffer from dementia by 2060.

Alzheimer’s is the most prevalent cause of dementia. The WHO reports that Alzheimer’s contributes to 60% to 70% of dementia cases.

Alzheimer’s is usually a progressive disease. During its early stages, many people with dementia can live independently, although they often benefit from emotional support and services that promote well-being and address cognitive impairment. Care partners can assist people with early-stage dementia by engaging them in pleasant activities, supplying facts that have been lost to an impaired memory, and helping with decision-making.

As symptoms become more severe, individuals with dementia may need help preparing meals and engaging in other activities of daily living. At some point, individuals with dementia may need complete supportive care that might best be provided in a residential care facility that specializes in caring for individuals with dementia.

Care Partners and Care Givers

A new report by the National Academies of Sciences, Engineering, and Medicine (NAS) examines strategies that caregivers, care partners, and society can employ in caring for individuals with dementia. The report can be purchased as a 226-page paperback or downloaded for free after registering with an email address.

The NAS uses the term “care partner” to refer to friends and family members who help individuals with mild cognitive impairments. Care partners may or may not live with the person they are helping.

The term “care partner” recognizes that the person with dementia and the person providing help are working together. People who live with the early stages of dementia are not passive recipients of care. Rather, the care partner and the person in need of care work collaboratively, each taking responsibility for recognizing symptoms and meeting needs associated with cognitive decline.

A review of care partner literature suggests that the term “care partner” is a useful reminder that both individuals in the relationship are responsible for taking care of themselves. The care partner may be healthier than the person with dementia, but care partners have health needs of their own. An important component of a care partnership is assuring that the needs of both partners are met.

Caregivers assist patients who are in more advanced stages of dementia and need more extensive help with the activities of daily living. While care partners are typically friends, neighbors, and family members, caregivers also include paid professionals. Caregivers often live with a dementia patient, either in the patient’s home or in a care facility.

Collaborative Care

A committee of the NAS reviewed evidence compiled by the Agency for Healthcare Research and Quality (AHRQ) and other sources to determine how the unmet needs of care partners, caregivers, and individuals with dementia could best be addressed. The committee concluded that more research is needed and that future research should be held to more rigorous standards than is seen in a majority of the existing studies.

The committee did identify two evidence-based means of improving care, services, and support for individuals with dementia and their care partners or caregivers. First, there is some evidence that enrolling dementia patients in a collaborative care program can improve the quality of life of dementia patients while reducing emergency room visits. Collaborative care begins with a care manager who creates and monitors a care plan.

The care manager coordinates with physicians, psychologists, social workers, nurses, occupational therapists, pharmacists, and other professionals who are part of the care team, as well as with caregivers and care partners. Each member of the team provides information to the care manager, who shares that information as needed with other team members. The goal is to continually assess and evaluate the needs of the patient and of caregivers and care partners so that those needs can be met before a crisis develops. 

Unfortunately, few collaborative care programs exist. Developers of collaborative care programs must overcome resistance from specialists who are comfortable working in their own field and who do not necessarily recognize the value of collaborating with people who work outside of their specialties.

Reach II

The second evidence-based success is a program known as REACH II. REACH stands for Resources for Enhancing Alzheimer’s Caregiver Health. REACH II targets caregivers and care providers. 

The program identifies risk profiles based on an “assessment of depression, burden, self-care and healthy behaviors, social support, and problem behaviors.” Caregivers who may be at risk are provided with “information, skills training, problem solving, role playing, stress management, and telephone support.”

The NAS committee concluded that the evidence supports a conclusion that REACH II reduces caregiver depression and might reduce caregiver stress. While study results have been inconsistent, the trend among studies suggests that REACH II may also improve a caregiver’s overall health, improve the caregiver’s reaction to challenging behaviors of dementia patients, and enhance the safety of persons living with dementia.

Perhaps because REACH II does not meet the institutional resistance that burdens collaborative care models, the NAS found that REACH II “is being implemented in a variety of community settings with promising results.” The NAS recommended that community stakeholders investigate and, when feasible, implement both REACH II and collaborative care models. Caregivers and care providers may benefit from those programs if they are available and may want to advocate for their development if they are not yet available in their communities.

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