A New Approach to Caregiving for Dementia Family Members

Sally Abrahms

The prevalence of dementia is undisputed—5.4 million alone in the U.S.—and those numbers are about to swell. Remember, the oldest of the 83.1 million boomers turns 72 this year. The result will be countless Alzheimer’s and other dementia caregivers.

While unintended, many with dementia are overmedicated or dismissed as being “out of it.” Fortunately, experts are finding innovative ways to think about, handle the disease, and educate others.

And, they are seeing stunning results for both dementia caregivers and their loved ones: reduced agitation, depression, behavioral problems and medication, and for care partners, less social isolation and more resources.

There is no cure for dementia, but the new approach for those in the early or mid stage is potent. It includes providing stimulating and pleasant experiences, exploring their strengths, and keeping them socially engaged.

For caregivers, the goal is to find meaningful ways to still connect with their spouse or parent, meet others in similar straits, and reduce loneliness.

John Zeisel, author of I’m Still Here: A New Philosophy of Alzheimer’s Care and a leader in dementia care, sums up this mindset: “We need to focus on what our loved one with dementia can do, not what they cannot do. “That might mean your husband can no longer attend a football game, but the two of you can snuggle on the couch and watch the action on TV together.

Innovative Dementia Initiatives

While still far from mainstream, these concepts are gaining momentum:

Person-Centered Care. In other words, letting those with dementia do what provides pleasure or comfort. If “Elizabeth”asks for chocolate or even a nightcap before bed, why not unless there’s a health reason? Bath in the middle of the night? Sure, if staff is available. (Family caregivers, relax. You don’t have to run the water at 3 a.m.!)

Pet (not just dog) Therapy. At the Life Care Center of Nashoba Valley in Littleton, Massachusetts, llamas live outside the memory unit. The animals often come on the floor so residents can stroke and interact with them.

Horse (a.k.a. equine) therapy also seems promising. Studies from Stanford University, University of California, Davis and Ohio State University‘s equine therapy center found people with dementia who cared for horses (grooming, walking, feeding) had improved moods and quality of sleep, were more cooperative and calmer.

Creative Expression. Arts professionals, whether poets, musicians, artists or dancers are working with cognitively impaired adults. They might help them create a group poem or a piece of art, for example.

Can’t dance in a wheelchair or walker? Oh, yes they can! They can move their arms and legs to the music and join their upright, twirling peers, along with their teachers, in dance routines.

Get in Touch with Younger Self. Forget short-term memory; their long-term memory may be intact. Movie theatres across the country offer dementia programs to tap into it. Participants watch snippets of old-time films with famous lines (Bogie bidding goodbye to Ingrid Bergman in “Casablanca”: “Here’s looking at you, kid.”) With the help of a facilitator, that familiarity often triggers memories and conversation.

So can long ago passions like baseball. Hebrew Home at Riverdale in New York City has created a replication of a Yankee’s dugout at it nursing home, including an old radio broadcasting the famed announcer Phil Rizzuto.

Even asking Mom about her past (i.e. how she met Dad or her beloved dog) can spark positive memories. Triggering memories is known as “reminiscence therapy.”

That’s the theory behind virtual reality (VR) technology. With a special head- set and goggles, and a 360-degree camera that takes panoramic images, seniors with memory loss can “travel” to their old neighborhood, the restaurant they loved or perhaps their favorite foreign country.

Doing Activities Together

Participating in something jointly outside the role of caregiver/spouse or caregiver/adult child can bring families closer. Look at these cutting edge options:

Sing in a chorus of caregivers and dementia care recipients. Aptly named The Unforgettables, the group grew out of the Comprehensive Center on Brain Aging at NYU Langone Medical Center. A professional conductor-director teaches breath, vocalization and performance (the way they would to a cognitively sharp chorus). The chorus meets once a week and puts on a concert for the public. Besides singing, Giving Voice Chorus in Minnesota has a toolkit for other communities.

Attend “memory cafes.” More than 100 cafes for care partners and family members with Alzheimer’s are happening nationwide. They take place in coffee shops, community centers, libraries or museums—really anywhere. Over coffee and sweets, there’s camaraderie; caregivers swap strategies, stories and resources.

Take a cruise designed for people with early stage Alzheimer’s and their care partners. It’s a time to de-stress, enjoy activities together and apart, and learn while traveling someplace great. One to the Bahamas, organized by Lori Le Brey, founder of the online community Alzheimer’s Speaks, pushed off in 2017; another group is launching a cruise in 2018 to Alaska.

Dementia-Friendly Communities

There’s a movement afoot called The Dementia Friendly America initiative that has partnered with 35 national organizations to bring dementia friendly programming and education to local communities. That might be teaching first responders or shopkeepers and banks, for instance, about how to interact with a person with dementia .

Brookline, MA is one of the first dementia-friendly communities in the U.S. Their initiative “It Takes a Village” provides cultural offerings to residents with dementia and their caregivers. It might be an interactive story telling program at the local bookstore, a music performance (those with dementia can participate) at the town’s music school or a talk about antique cars at its auto museum. Across the country, Momentia is a Seattle-based, grassroots movement tasked with keeping those with memory loss and their care partners engaged in community events.

Perhaps the coolest concept is Hogeway, a Dutch, government-subsidized residential community made to look like the 1950s for people with severe dementia. Residents move around the village freely (it’s secure and self-enclosed, with cameras everywhere). “Dementia Village,” as it has been dubbed, has a bank, grocery store, post office, movie theatre, restaurants and hair salon. And those clerks and cashiers manning them? They’re really healthcare workers in civilian clothes trained in dementia care. Experts are finding Hogeway residents live longer, eat better and require less medication. There are other residential villages planned in Switzerland, England, Canada and Tasmania.

Back at home, next year San Diego will open Town Square, a miniature, old-fashioned city for dementia adult day participants. And, the Miami Jewish Health Systems is planning a research-based, cutting edge residential “dementia village” on 28 acres in Miami.

Dementia experts, designers and healthcare workers are determined to make life better for both older adults with memory loss and their families. There are increasingly more options. With the upcoming dementia surge, it couldn’t come soon enough!

Resources for Further Support

Alzheimer’s Association

http://www.alz.org/care/

  • An Alzheimer’s Navigator, a tool to come up with an action plan tailored to your circumstances, with resources in your community
  • ALZConnected, an online community with forums, message boards and live chat rooms for caregivers and those with ALZ and dementia, education and strategies for caregivers
  • An Alzheimer’s and Dementia Caregiver Center
  • 24 hour help line at 1-800 272-3900

Alzheimer’s Foundation of America

http://www.alzfdn.org

  • Helpline at 1-866-272-3900 (9 a.m.-9 p.m. EST))manned by licensed social workers who know resources and answer all types of questions

Alzheimer’s Reading Room

http://www.alzheimersreadingroom.com/2010/07/last-25-articles-on-alzheimers-reading.html

  • Articles for the Alzheimer’s and dementia community started by a caregiver spouse

Alzheimer’s Speaks (Live Online Radio)

http://www.blogtalkradio.com/alzheimersspeaks/2015/ Besides the radio program:

  • Directory of resources by city and state
  • Free monthly webinars taught by people with dementia, their caregivers and professionals

Eldercare Locator- U.S. Administration on Aging http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx or 1-800-677-1116

  • Click on “Alzheimer’s” under topic, pop in your zip code or city and state, and you will be taken to local resources
  • Booklets, statistics, long-term care, advance planning information

Alzheimers.gov Government website

http://www.alzheimers.gov

  • Comprehensive list of resources and dementia organizations

U.S. Department of Veteran Affairs

http://www.caregiver.va.gov/help_landing.asp

  • Support services, resources and information for caregivers of veterans

National Center for Creative Aging

http://www.creativeaging.org

    • Web-based and community creative arts resources and ideas
    • A directory with programs nationwide

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One Response to "A New Approach to Caregiving for Dementia Family Members"

  • Diane McHenry | May 14, 2018 at 6:19 pm

    This was a very useful and inspiring article. Thanks for the resources!

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