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Marguerite Manteau-Rao

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The 'Presence' Approach to Care With Alzheimer's and Other Types of Dementia

Posted: 05/26/2011 11:49 pm

We can put all our efforts into looking for a cure:


That's one way.

Meanwhile, the 5.4 million persons who have been dealt an Alzheimer's diagnosis are left waiting, and so are their 15 million caregivers. The stress involved is tremendous. According to the 2011 facts and figures from the Alzheimer's Association:

Forty-three percent of caregivers for people with Alzheimer's disease or other dementia reported that the physical and emotional stress of caregiving was high to very high. The physical and emotional impact of caregiving on Alzheimer and other dementia caregivers is estimated to result in $7.9 billion in increased healthcare costs in the United States.

Sixty-one percent of family caregivers of people with Alzheimer's and other dementias rated the emotional stress of caregiving as high or very high. In addition, about 33 percent of family caregivers of people with Alzheimer's and other dementias report symptoms of depression. Family caregivers of people with Alzheimer's and other dementias reported a good amount to a great deal of caregiving strain concerning financial issues (56 percent) and family relationships (53 percent).

Caregivers of people with Alzheimer's and other dementias said they were somewhat to very concerned about maintaining their own health since becoming a caregiver (75 percent). Dementia caregivers were more likely than non caregivers to report that their health was fair or poor, and they were more likely than caregivers of other older people to say that caregiving made their health worse.

Caregivers of people with Alzheimer's or another dementia are also more likely than non caregivers to have physiological changes that may reflect declining physical health, including high levels of stress hormones, reduced immune function, slow wound healing, new hypertension, new coronary heart disease and impaired endothelial function, which may be associated with increased risk of cardiovascular disease.

Spouse caregivers of people who were hospitalized for dementia were more likely than spouse caregivers of people who were hospitalized for other diseases to die in the following year, even after accounting for the age of the spouse caregiver.

Whichever help is currently provided to care partners is obviously not enough. Support so far has mostly been in the form of information sharing, skills training, stress-management techniques, peer-support and behavior modification solutions. While important, these types of external interventions tend to not stick. They fail to provide care partners with the inner resources that will sustain them over the long run. The basic attitude is unchanged, and that is what needs to be worked on.

The Presence-based approach* to Alzheimer's care focuses on cultivating one's innate ability to be present in the moment, otherwise known as mindfulness, along with a wise understanding of the reality of the person with memory challenges, and developing a mindful care community. It aims for no less than a radical and enduring shift in the care partners' attitude. It also allows care partners to meet the forgetful ones in their present-moment reality, which is where they most successfully engage.

The Presence approach draws its legitimacy from several sources. First, is Jon Kabat-Zinn's mindfulness-based stress reduction (MBSR) training, a clinically proven way to reduce stress in the general population, through the practice of mindfulness. Second is the culture change movement in elder care, most particularly the work of pioneers such as Christine Bryden, Richard Taylor, Olivia Ames Hoblitzelle, Nancy Pearce, Bill Thomas, Allen Power and Nader Shabahangi. All emphasize the need to be present for the entire reality of the person, and also focusing on the many gifts from forgetful states. Third is the Zen Hospice model that emphasizes the importance of a mindful care community and environment to sustain one's mindful care practice. There is qualitative evidence that such an approach can lead to dramatic increases in well-being, both for the care partner and the person with memory care needs.

For now, because Presence training is not yet available to the general public, here are three steps that you can take on your own:

  1. Start a mindfulness practice, either joining an MBSR class or taking instructions in Vipassana meditation. If there's no instructor in your local area, you can learn to practice online.
  2. Become wise about the care needs from your loved one, and read the following books:

    • "Dementia Beyond Drugs," by Dr. Allen Power, geriatrician
    • "Alzheimer's from the Inside Out," by Richard Taylor, a psychologist living with Alzheimer's
    • "10,000 Joys and 10,000 Sorrows," by Olivia Ames Hoblitzelle, wife and mindful care partner
    • "Inside Alzheimer's," by Nancy Pearce, geriatric social worker
  3. With other family members, friends and care partners, start a mindful care community. Invite them to train in a mindfulness practice with you. Get them to read the same books. Sit and meditate together, and share your joys and sorrows.

There's no need to wait.

*Full disclosure: I am the co-founder of the Presence Care Project: http://www.presencecareproject.com, along with Dr. Allen Power, geriatrician and author of Dementia Beyond Drugs.

 

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07:34 AM on 05/28/2011
I practiced "presence-moment" caregiving with my mother who had Alzheimer's. The upside of this terrifying disease is that it presents an opportunity for you to 'be here how.' I knew that when I was distracted and multi-tasking, my mother checked out and I couldn't connect with her. As soon as I calmed my thoughts and focused on one thing - spending time together - we connected. I took photos of my mother with my iPhone to help me stay connected with her and the images are grainy, sepia toned and a very intimate portrayal of what we experienced together. Alzheimer's taught me the value of staying in the moment.

Celia Pomerantz
Author/Photographer of Alzheimer's: A Mother Daughter Journey
celiapomerantz.wordpress.com
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Marguerite Manteau-Rao
07:11 PM on 05/30/2011
Beautiful, Celia! and thank you for sharing. Yes, they are our teachers, if only we will let them . . . Better than the monastery, or the meditation retreat, is spending time with one with extreme forgetfulness.
04:33 PM on 05/27/2011
As a geriatric social worker I can see how the Presence-based approach has potential to positively impact caregivers’ health and interactions with individuals diagnosed with Alzheimer’s disease. It would appear this approach supports the view of seeing individuals with Alzheimer’s as the whole people they are underneath the disease, even when they no longer look like the person we once knew and loved. As we are able to become more present in the moment, we can also connect to other parts of the person with Alzheimer’s beyond their cognitive selves. This can result in more successful engagement with the care recipient, as the article mentions, and it can have a positive impact on behavior and physical health. Of course, such an approach is difficult for any caregiver to make alone. Along with the suggestions in this article, I recommend caregivers seek out other resources like the National Family Caregivers Association www.nfcacares.org and Care.com’s Senior Care Counseling Program www.care.com/scc for support and guidance.
Sincerely,
Mary
Care.com
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Marguerite Manteau-Rao
07:15 PM on 05/30/2011
Thank you Mary. Yes, the Presence approach is best practiced in community. Like any mindfulness practice, it is very simple, and also very difficult to sustain. In the 2500 year old Buddhist tradition, the community (sangha) is one of the three pillars of practice (the other two being the teacher, and the teachings) . . .
12:02 AM on 05/27/2011
Speaking from the front lines of elder care, I would offer the opposite advice. Check out. This is a sweet and well-intentioned article that will just serve to make caregivers feel even crappier about the open-ended, under-supported nightmare they are already trapped in.
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Marguerite Manteau-Rao
07:18 PM on 05/30/2011
I agree with you that being on the front lines of elder care is no easy journey. And that the Presence approach is only but one part of the whole puzzle towards a healthier system of care. Systemic issues, allocation of resources, a shift in our collective values, are also needed.