Alzheimer's disease and memory loss is invisible but, if you're over the age of 50, you certainly know it's there. You know someone who has it, care for someone who has it or know someone else who's caring for someone who has it. When you've forgotten a name or lost your keys one too many times you may worry that you have it. Recent Alzheimer's Association reports don't quell that fear. They warn that every 68 seconds Alzheimer's disease strikes a life. Is fear driving our society to keep Alzheimer's and memory loss invisible? Are we making progress bringing more education and awareness to our communities?
Dr Jytte Lokvig, author, lecturer, Alzheimer’s consultant and founder of America's first Alzheimer's Cafe says, "There's still so much fear and anxiety. People don't even want to be associated with this disease. That's why I named it the Alzheimer's Cafe." Since the creation of her 5 year old Santa Fe "cafe" the trend is now sweeping the country--- state by state. The cafe, powered by volunteers, creates a once a month social outlet for families living with Alzheimer's disease.
Lokvig's assertion that society is still fearful and anxious about Alzheimer's was confirmed in November by a recent poll showing 44% of America naming Alzheimer's as the most feared disease. That stat rises to 56% in polling of people 65+. Much of our fear is driven by an ongoing lack of preparedness in coping with the disease or supporting loved ones that live with it. Several years ago, before my mother was diagnosed with dementia, a friend gave me a copy of an article called, "Letting Go of my Father." In this elegant remembrance, a son portrays the unknowns, logistical problems and personal dilemmas that are universally encountered in family caregiving. He articulates the transient sense of isolation family members often feel, "As I walked the streets...I took to wondering which of the middle-aged people I encountered were quietly struggling to cope with their own crisis. How many of them felt utterly out of their depth? How many others, having come through an ordeal, had experience that they had no ready opportunity to share?" Those words were written in 2010. Are we any more prepared and open about dealing with Alzheimer's today?
Another driver of fear is our worry that we may someday lose the ability to care for ourselves or become a burden. The resulting denial creates a stigma that hampers our creation of services and support systems. It slows our understanding. In September, Alzheimer's Awareness Month, the Mayo Clinic addressed this issue likening the stigma of Alzheimer's to the social stigma of Cancer before society brought more of those diseases out in the light. "Part of the problem," Lokvig states, "is that there's no cure for this disease. There are still no truly effective medical or pharmaceutical remedies for Alzheimer’s."
“When you’re caring for a person or you are someone living with Alzheimer’s or dementia, your daily life overwhelmingly revolves around the disease. Increasingly your only contact with the outside world as care partners is disease related. ” Dr. Lokvig explained, “Alzheimer’s café time gives everyone a chance to be themselves and to relax in a safe, supportive, and non-judgmental environment. The café is a respite from the disease and it allows the care-partners to share something positive and see one another in the community through a different lens.” That need and the shortage of other services for people living with Alzheimer’s and Dementia is why she's become an educator on the disease, a guide for caregivers, and an advocate for the national development of Alzheimer's Cafes. "There's absolutely no excuse for a community to not have a cafe," she said,"People find it unbelievable that you don't need a bazillion grants to start one."
"They're easy to start. It doesn't cost money," geriatric social worker Carin Mack said of her experience initiating the growth of Alzheimer's Cafe's in Seattle, Washington."One needs to find a good space in the community and work with a willing business owner to host the cafe. Each cafe is different and it is a good idea to visit one or two before you set one up," she explained. "You need someone willing to do the publicity, a person who will be there for continuity and a couple of volunteers." Mack started the first Alzheimer's Cafe in Seattle and partners with the Washington Health Foundation on a regional platform for the development of cafes.
"It’s a slow process," Dr Lukvig said referring to the work of cultivating a cafe community. The same can be said, however, for the process of educating ourselves and lifting awareness about Alzheimer's and dementias. Because there are stages to the disease there's often time for people living with Alzheimer's to take leadership helping us understand and modeling courage, acceptance, and resilience. Their caregivers often turn to the Internet for resources and blog about their challenges and rewards sharing moving stories of Alzheimers care with a wondering world. The media, for it's part in Alzheimer's education, ebbs and flows as is evident in this list of mainstream media profiling Alzheimer's 1981-2013. Focus spiked in 2009 and 2010 then quieted again last year. In 2012, for the first time, President Obama launched a National Alzheimer's Plan, with ambitious goals to prevent and treat Alzheimer's by 2025. While the nation waits for that success the plan directs much needed money toward research, caregiver support, and national education and awareness programs.
Our understanding and ability to talk about Alzheimer's still needs growth but is constantly improving. We've come a long way from the beginning of this century when Maria Shriver, whose father had dementia, confessed the hush and stigma her family faced. Alzheimer's disease, its sorrows and demands, weigh heavily on this nation and its families. Healing and visibility is coming, slowly, one story at a time, one cafe at time, and one day at a time.
Thanks to Dr Jytte Lokvig for generous time and guidance in producing this blog.
