Marguerite Manteau-Rao

For the 15 million in this country who are caring for a loved one with dementia*, this is what life is like -- according to the Alzheimer's Association 2012 Report:

• 61 percent of dementia caregivers suffer from high emotional stress.
• 33 percent report symptoms of

This story is for the 2.3 million long-distance caregivers who have a loved one with Alzheimer's.

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I came in to introduce the Presence Care Project, a new type of mindfulness-based approach to dementia care. I came out with tears in my eyes and a master lesson in wise acceptance.

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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...

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...

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