Reducing the stigma of Alzheimer’s disease

by Betty Lane for Well and TribuneI believe that attitudes can change through enlightenment.Reducing the paralyzing stigma and fear that wrap themselves around dementia and Alzheimer’s disease, the most prominent form of dementia, is of urgent importance today.Fear and stigma are closely aligned to stereotyping and discrimination. It seems to me that the sharing of personal stories about life journeys with conditions related to brain functions is one of the most powerful ways to break down barriers.The recent speaking out by a number of Canadian celebrities about their experiences with mental illness has certainly been successful in raising the awareness level around depression. Knowledge is protective and relationships are key.Many people fear growing old because they are afraid of dying. Humans are fearful of the unknown, of being out of control, of being a burden to others and of living a meaningless existence because they are “no longer productive.” Sometimes people also fear being violated, robbed or taken advantage of, as in cases of elder abuse.The relationships with self and others can cause misery or happiness.They define us as human beings. The relationship with parents is the oldest and most important. Most of us first experience aging and death through our parents. These experiences fundamentally and profoundly affect us.When my late husband moved into long-term care in 1999, our Hamilton geriatrician Dr. William Molloy told me my role was going to change from caregiver to advocate. Even though my husband’s journey with Alzheimer’s was over in 2001, I have continued my advocacy for persons living with Alzheimer’s or related dementias.On April 12, 2012, the day that would have been our 54th wedding anniversary, the World Health Organization released Dementia: A Public Health Priority, a much anticipated snapshot of dementia around the globe. The report shows that a new case of dementia is diagnosed every four seconds and estimated that the total world wide cost of dementia in 2010 was $604 billion.The Alzheimer Society of Canada’s 2010 report, Rising Tide: The Impact of Dementia on Canadian Society, highlights that dementia will affect 1.1 million Canadians in less than 25 years. The rising economic costs are expected to increase tenfold to $153 billion a year.In the words of global health expert Dr. Peter Piot, dementia is “a ticking time bomb.”The WHO is asking governments around the world to develop a plan using solutions and approaches being adopted in other countries. Already five of the G7 countries have committed to a plan.Has Canada? No. Why not? Perhaps Prime Minister Stephen Harper needs to be asked this question by all Canadians.In Niagara, we are very fortunate to have access to the services and resources of the Alzheimer Society. They are going to need increased community support to help deal with the rising tide.We should also be grateful for the remarkable leadership in our midst of Doug Rapelje. His gentle guidance and vision for the future needs of seniors in our community is indeed inspiring. Under his chairing of the city’s seniors advisory committee, wheels are now in motion for establishing a day hospice program in Welland.Down the road, we will hopefully see a hospice facility as well, in partnership with Hospice Niagara.The more we can learn about the things we are afraid of, the better we will be able to cope. What actually might happen if we reduced the stigma and fear of dementia?Author Anne Davis Basting in her book Forget Memory lists the following answers to this question:More people might get diagnosed;More people might plan ahead and have family discussions about what to do if they should experience dementia;More people might spend more time with friends who live in long term care and retirement facilities;Less stigma and fear might reduce stress for people with dementia, which might improve cognition;Friends and family might be more involved and supportive of care partners and people with dementia, reducing social isolation;More social support might mean less stress for care partners, improving their health;Less stigma and fear might give us better attitudes about aging and longer lives;More people might go into the field of dementia care, which could lead to innovations in all areas from housing to care services;More options for care might mean less stress for working adults managing care for their parents;Less stress for working adults might mean greater productivity in the workplace;Cultural institutions might acknowledge people with cognitive disabilities as valued members of the community they serve;People with dementia and their care partners might feel more comfortable visiting cultural institutions that welcome them, again reducing stress and challenging their cognitive skills.Maybe we could grow as human beings by expanding our capacity for compassion.I would also like to add that maybe we would actually develop a national dementia plan for Canada. Visit www.alzheimer.ca/WHOreport to learn more about the WHO report and the social and economic impact of dementia on all Canadians.In April, I attended A Changing Melody, which is a learning and sharing forum for persons with early stage dementia and their care partners. The daylong event was held in St. Catharines, hosted by the Alzheimer societies of Brant, Haldimand–Norfolk, Hamilton–Halton, and Niagara. The theme was “Hope, Harmony through Humour.”I came away from that day feeling that there is hope as the melody continues to change.With new attitudes and better awareness, there can be a reduction in stigma and fear. I pray that our country will join with other countries of the world prior to World Alzheimer Day which is scheduled for Sept. 21, 2012.Source: Well and Tribune (no longer available online)