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The Complexities of Alzheimer’s Caregiving

Stria Staff April 1, 2019
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As the impact of Alzheimer’s Disease grows, nearly all longevity market sectors will feel the effects. We’ve rounded up stories to help you learn about the unique challenges for caregivers of people with dementia.

Each year the Alzheimer’s Association releases a report on “Alzheimer’s Disease Facts and Figures.” The most recent report found that nearly half of all caregivers supporting older adults are caring for someone with Alzheimer’s or another dementia. Most are women and most live with their loved one in their community. That sounds a lot like the family caregivers we often think about in the longevity market, but people caring for someone with dementia face a tougher road. In fact, twice as many caregivers of those with dementia deal with substantial emotional, financial and physical difficulties.

Here are some recent stories on the complexities of Alzheimer’s and dementia caregiving.

Highlights & Insights: Curated excerpts from though-provoking articles

To Manage Dementia Well, Start with the Caregivers
NPR | Lauren Gravitz

One of the most important aspects of caring for someone with Alzheimer’s and other dementias is understanding the diseases. The difficulty, [Helen Kales, a geriatric psychiatrist who practices at the University of Michigan] explains, isn’t the memory loss, per se, but the behaviors that accompany it — everything from anger to petulance to violence to depression.

…Research suggests that it’s far better to use behavioral and environmental approaches—ones that are sensitive to, and focus on, the needs of a patient, Kales says. “Particularly when you train family caregivers to deliver them in the home.”

As more people survive into their 80s and 90s, there are more people living with Alzheimer’s and other dementias than ever before. And the burden is one that primary-care physicians can’t handle alone.

“We realized we needed to do something different,” Kales says. “We just can’t train enough physicians to provide dementia care. Instead, we need to take the daily treatment and management of these patients out of the hands of physicians and put it into the hands of the caregivers themselves.”

A Study of Family Caregiver Burden and the Imperative of Practice Change to Address Family Caregivers’ Unmet Needs
Health Affairs Blog | Jill Slaboda, Robin Fail, Gregory Norman, Diane E. Meier

Health care providers can have a large impact in alleviating caregiver burden and should recognize the caregiver as a trusted member of the patient’s care team. Caregivers’ descriptions of their challenges indicate the importance of incorporating regular assessments of the caregiver’s emotional health and referrals to support services, such as counseling or support groups, into routine care. The most challenging behaviors caregivers of loved ones with dementia listed include agitation or aggression, repetitive speech or actions, and wandering. These responses, indicate the need for providers to both train caregivers in how to interpret and manage these behaviors and in how to recognize the underlying causes of these behaviors…

Comprehensive care for patients with dementia and their family caregivers is lacking in our health system, leaving millions of individuals struggling under the weight of unmanaged symptoms, stress, and emotional burden. In large part because their caregivers are exhausted and overwhelmed, individuals with dementia are typically high-frequency utilizers of health care services.

How to Navigate Marriage When Spouse Has Alzheimer’s
Chicago Tribune | Cindy Dampier

It was a rarely discussed aspect of the world of dementia—the inner workings of marriages in the shadow of a disease that affects 1 in 10 Americans ages 65 and older, and about 5.7 million people in all age groups…

Even among the community of people who study, treat and advocate for Alzheimer’s patients, open discussion about how couples affected by Alzheimer’s choose to navigate intimate relationships outside the marriage has remained almost taboo. “I don’t think we’re even ready to have the discussion this suggests,” says [Laura Gitlin, dean of the College of Nursing at Pennsylvania’s Drexel University]. “It’s truly a brave, new world.”…

Yet, as our population ages… we will increasingly need to answer the question…: What are the boundaries of commitment and love when one partner can no longer remember the other or comprehend their shared history?

Firearms and Dementia: How Do You Convince a Loved One to Give up Their Guns?
NPR | Melissa Block

Families of people with dementia will often take away the car keys to keep their family member safe. They might remove knobs from stove burners or lock up medicine.

But what’s less talked about is the risk of guns in the home for those with dementia.

That’s a growing problem, as the U.S. population gets older and the number of people with dementia soars. According to the Alzheimer’s Association, that number is expected to double in the next 20 years to about 14 million—the vast majority over the age of 65.

Researchers also estimate that nearly half of people over 65 either own a gun or live in a household with someone who does. Given those statistics, people who work with dementia patients are trying to raise awareness and make gun safety a top priority for families.

Primary Care Innovations Can Improve Alzheimer’s and Dementia Care for Patients, Family Caregivers, and Providers
Health Affairs Blog | Kristin Lees Haggerty, Rebecca Jackson Stoeckle, Lynn Spragens, Lee Jennings, Jane Carmody

For many people with Alzheimer’s or other dementias and their family caregivers, primary care is their first and sometimes last resource for managing these challenging chronic and progressive illnesses. Primary care practices caring for a rapidly aging population often lack the time, expertise, and resources necessary to provide the kind of high-quality care that can both maximize Alzheimer’s and dementia patients’ health and well-being and minimize the burden that dementia places on family caregivers and systems. The evidence suggests that [the University of California, Los Angeles (UCLA) Alzheimer’s and Dementia Care (ADC) program] can help address both of these issues by making care better and more efficient—if policy makers and payers help set the table. 

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