LeadingAge Magazine · January-February 2020 • Volume 10 • Number 01

Help for Overwhelmed Family Caregivers

January 17, 2020 | by Jane Sherwin

Advice from experts on tools to help those caring for family members living with dementia.

Eighty percent of people living with Alzheimer’s disease and related dementias are cared for in their homes, according to the Centers for Disease Control. More than 16 million Americans provide an estimated 17 billion hours of unpaid support for family and friends, who often present very difficult dementia-related symptoms. The economic value of this unpaid caregiving dramatically surpasses spending for home health and nursing home care, says Andrew Esch, M.D., M.B.A., a consultant to the Center to Advance Palliative Care in New York City.

Furthermore, the number of people living with Alzheimer’s disease is expected to double in the next 20 years. A central concern is the anxiety, stress, and poor health experienced by caregivers.

“Physicians often say, ‘I’m sorry, there is nothing we can do for you,’ creating a cycle of despair and unneeded suffering,” says Laura Gitlin, Ph.D. But there are things that can be done, she says, for both the person living with dementia and the caregiver: “Health providers should be offering or referring families to evidence-based programs.” Gitlin is distinguished university professor and dean of the College of Nursing and Health Professions at Drexel University, and the creator of the Skills2Care® program for Alzheimer’s caregivers.

A Call for Communication Among all Participants

Effective communication among providers, caregivers, and patients is essential to easing the strain on dementia caregivers, according to Esch and Maribeth Gallagher, D.N.P., a psychiatric nurse practitioner and dementia program director at Hospice of the Valley in Scottsdale, AZ.

Editor’s note: Esch and Gallagher presented an education session, “Improving Dementia Care Through Communication and Systems Change,” at the LeadingAge Annual Meeting & EXPO in October 2019.

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“Individuals are often thrust into the position of caregiver with no training and little support, resulting in adverse physical, financial, social, and psychological outcomes,” says Gallagher. “Caregivers may be further stressed by physicians’ failure to pay attention once the patient is diagnosed.” This “caregiver strain” is frequently associated with higher emergency room visits and nursing home placement for people with dementia.

Furthermore, persons living with dementia experience increasingly complex care needs, comorbidities, and multiple years of disability. Aggressive care interventions typical of our fragmented care system may not match the needs of dementia care.

“Persons living with dementia and their caregivers need to know how to plan for this complex care,” says Gallagher. “The provider can organize collaborative thinking, for which there is a tremendous need. Family and friends should be involved, as people who know the patient and can advocate for her as the condition advances.”

Gallagher also points to the importance, and challenge for caregivers, of communication with patients: “Dementia diminishes one’s ability to communicate verbally. So it helps to consider emotional expressions and physical behaviors as indicators of unmet needs. A behavior can be perceived as manipulative or combative when actually it is communicating fear or pain.”

Improved communication among providers is also essential, say Esch and Gallagher. Less than 50% of people with dementia have been accurately diagnosed. Electronic health records have big gaps in diagnosis information. And those who do know the diagnosis may know little about the goals of day-to-day care, essential to caregiver effectiveness.

“Individuals are often thrust into the position of caregiver with no training and little support, resulting in adverse physical, financial, social, and psychological outcomes. Caregivers may be further stressed by physicians’ failure to pay attention once the patient is diagnosed.”

Esch and Gallagher recommend providers take 3 steps to ease caregiver strain: Include the caregiver as a member of the care team and validate their contributions; ask about the caregiver’s health and well-being, not just about the person living with dementia; and then, address the caregiver’s needs.

For providers, Esch and Gallagher recommend Implementing Best Practices in Dementia Care, a tool kit developed by the Center to Advance Palliative Care.

Gallagher thinks care for the dementia caregiver is slowly improving, and Esch agrees that people are hungry for information. But “the system is still antiquated,” says Esch, and there is resistance to change. “We need to make people aware of the situation around caregiving, and to give family members the strength to be change agents.”

An Evidence-Based Program for Caregivers

Gitlin’s Skills2Care model explains how the environment (e.g., clutter or loud noises) influences the behavior (such as agitation or verbal outbursts) of a person living with dementia. The occupational therapist and the caregiver together brainstorm solutions and develop an action plan. Skills2Care techniques focus on modifying the environment and reducing the complexity of an activity, thus reducing anxiety and increasing quality of life for the person and their care partner(s).

Gitlin says, “It’s the first and only program integrated into home care that systematically supports families. It’s brief in training, supports both the caregiver and the individual, and is reimbursable.”

Consider one real example of this approach at work: a sleep-deprived caregiver whose loved one is up and out of bed much of the night. Medication might or might not work, and would create its own difficulties. Instead, Kanchan Kamra, an occupational therapist, applied the Skills2Care model to the situation. Kamra, a doctoral student at Thomas Jefferson University in Philadelphia, worked with the caregiver to analyze what was happening: The person was on insomnia-inducing medication, took too many naps, and had a too-early bedtime. With the person’s physician, they changed the timing of medication, raised the blinds early in the morning, limited naps, and moved bedtime to a later hour. As a result, the person slept through the night 5-7 days a week, and the caregiver was very happy. (See this free webinar [registration required], led by Kamra, on Skills2Care.)

“Behavioral symptoms of dementia, such as refusing help during self-care, can be challenging for care partners,” says Catherine Verrier Piersol, Ph.D., professor and chair of the Department of Occupational Therapy at Thomas Jefferson University and director of Jefferson Elder Care.

“[It]offers a problem-solving approach,” says Kamra. “It’s client-driven and culturally aware. We see the caregiver as a lay practitioner, and we collaborate with her, focusing on her concerns, naming and framing them.”

Links to Further Information

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Related LeadingAge magazine articles:

Skills2Care involves 5-10 home sessions by a trained occupational therapist. Caregivers’ knowledge, skills, and confidence increase, while depression and distress are reduced.

Recent outcomes are promising. For example, caregivers report more confidence in addressing 96% of problem areas and less upset in addressing 88% of problem areas. Eighty-nine percent of caregivers were more willing to consider non-pharmacological strategies. In terms of patients, 93% of problem behaviors were reduced or eliminated.

As an occupational therapy clinical service, Skills2Care is available through Medicare Part A for home health care, and Medicare Part B (or other insurance) for home-based outpatient care. State and federal grants or private pay cover the program as an occupational therapy consult. The program is flexible as far as frequency and number of sessions.

“We want people to know that there are strategies that can promote engagement and quality of life, that there is much care partners can do to alleviate the stress of dementia caregiving,” says Piersol.

Jane Sherwin is a writer who lives in Belmont, MA.