I've just been reading about these two concepts for Alzheimer's care, which frankly could completely change the face of caregiving for families dealing with this difficult disease. Given that one of the biggest problems for family caregivers caring for their loved one at home is isolation/depression, the chance to be with a group of other caregivers (and care receivers) in an enjoyable social setting provided by the Memory Cafe is a perfect boost to mental and emotional health. Even respite care, though very necessary, doesn't provide the same kind of supportive, warm, interactive environment in which to simply exchange conversation, ideas and enjoy the company of others who completely understand the challenges of the Alzheimer's journey. It benefits both the caregiver and receiver to have this type of socially stimulating environment. It is not a "support group" for caregivers, since the aim is not to provide education, problem solving, or information, but rather just to have fun!
The concept for Memory Cafes is really beginning to catch on in England, and is now being actively advocated here in the US as well. The focus is on positive reinforcement among peers, laughter, food and simple pleasure in the company of others who are going through the same journey -- without any stigma attached. After all, other caregivers will be much more understanding of behaviors that might cause embarassment in a public setting. According to John T. McFadden, in an article written for the Alzheimer's Reading Room: A Reminder: Why We Need Memory Cafes, "Memory Cafes are, first and foremost, a setting in which persons with memory loss can share fun and laughter with their care partners and friends in a setting free from awkwardness and stigma."
Speaking as a former caregiver, I think this is a truly wonderful idea, one whose time has come! Mr. McFadden has written a newly released book to champion the cause, titled, Aging Together: Dementia, Friendship, and Flourishing Communities. He and his wife are planning to visit existing Memory Cafes in England in order to refine a model for use in America. This is a concept we should most definitely support. It just makes sense to tap this important resource we have in each other -- our sense of friendship and community, which can be an invaluable help to those on the front lines of Alzheimer's.
The second concept, which is new to me, but has been practiced at the Hebrew Home at Riverdale in New York for the past 10 years, is overnight care for dementia patients to allow caregivers a good night's rest at home. This innovative concept makes 24-hour use of the nursing home facility, to provide day care from 8:30am to 4 pm and overnight care from 7 pm to 7 am.
The program creates a sort of party atmosphere for the participants, with music, marimbas, and dancing as well as singalongs, crafts, and therapy sessions that last till dawn. There is also provision made for those whose Alzheimer's may be more advanced, which includes soothing sounds, aromatherapy, massage and touch therapy. If you would like to read more about this, here's a link to an Associated Press article appearing in the Wall Street Journal, updated October 1, 2012, titled: Overnight dementia 'camp' allows caregivers rest.
Because so many Alzheimer's patients are very wakeful and sometimes agitated at night (called Sundowning), it creates major problems for families when their sleep is disrupted night after night by this behavior. Again, from a personal experience perspective, this was the single most insurmountable problem for my family -- sleep deprivation for months on end. It errodes a person's health, sanity, and makes the demands of caregiving impossible to continue. It is a major complaint of Alzheimer's caregivers and one of the main reasons for institutionalizing their loved one. It doesn't have to be if there are more programs for overnight respite care developed around the country. It really makes perfect sense to use facilities around the clock (with different shifts of staff, obviously), so that families can rest and resume their care duties after a good night's sleep.
I would love to hear your feedback on these two concepts and any personal stories you'd like to share about how your family is affected by these challenges of caregiving. Feel free to comment below.
One of the most recurrent themes in eldercare is the highly detrimental effects of boredom & loneliness. This is something experienced by most elders, whether living alone or in an assisted living or nursing home situation. It can even be a problem for elders living with family, depending on the family dynamics.
For family caregivers, this translates into a very difficult issue, creating conflict and emotional upheaval, and, of course, guilt, if their loved one is afflicted by loneliness. Yet there are some bright spots on the horizon.
One pioneer in innovative long term care reform is physician William H. Thomas. He is a self-described "nursing home abolitionist" and has been an advocate for eldercare reform for decades, creating the Green House Project nursing home concept, the Eden Alternative philosophy and training to "deinstituionalize" eldercare facilities by alleviating the "three plagues" of boredom, helplessness and loneliness. The Eden Alternative, which incorporates pets, gardens and children into the culture of nursing home care has an international following and is actively revolutionizing elder care. In addition, this Harvard-trained physician has written numerous books, one of which he turned into a one-man play which he performed to raise further funds for his visionary goals. He is a passionate speaker who champions honoring and valuing elders and aging with dignity, love & joy. He is truly an inspirational, enthusiastic powerhouse of a man! Click here view a video of Dr. Thomas and catch a bit of his spirit and commitment. And here's another recent video with Dr. Thomas visiting a woman in a nursing home and bringing such joy and delight to her with some beloved opera played through headphones for her. OK, hanky-alert on this one. I melted into tears because she reminded me so much of my own mother.
Dr. Thomas and his wife have also developed and built an entire village in Shelburne, NY centered around these concepts, called ElderShire: Creating Well-Being through Living in Community. The need for this kind of revolution is most apparent to anyone who has experienced the soul-less bleakness that is prevalent in the current culture of nursing homes as "storage" for the elderly. Dr. Thomas' lifework offers hope and vision, along with well-designed and researched programs and materials for creating healthier, happier aging in our world. Given the graying of our populations (in particular the baby boomer generation in the US) these are ideas whose time has come and we must implement these changes now to create a better life for both elders and the ones who care for them!
If you should need further evidence of the importance of banishing the "three plagues" of nursing homes, the article which appeared in Science Daily this week supplies it -- titled: Mindfulness Meditation Reduces Loneliness in Older Adults, Study Shows. The study offers verifiable data that the meditation known as mindfulness-based stress reduction (MBSR) reduced both loneliness and also markers in the blood for inflamation response, which are indicated in a host of physcial and neurological diseases, including heart disease, stroke, and Alzheimer's.
Won't you join me in supporting this vision and important culture shift in whatever way is possible? I cannot imagine a more worthy goal than to turn our reality of aging (and let's face it -- no one has found the fountain of youth!) into one of health and well-being and joy!
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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