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WHY is So Little Attention Paid to Alzheimer's, Caregiving, and Dementia Titles despite Looming Epidemic--Part II

Posted Sep 07 2008 8:38pm

In Saturday's Blog Entry (20 June 2008), I offered to share a few hunches, opinions, and facts regarding what we need to do to pay more attention to a potential worldwide crisis --a looming Alzheimer's epidemic.

In 1997, when I began writing about dementia, caregiving, and Alzheimer's, there were a handful of titles available for caregivers. Since then, caregivers have been responsible for writing hundreds of books over the course of a decade. lists nearly 2,600 titles after an advanced keyword search for "Alzheimer + care." Incidentally, a similar search for "caregiver" produces over 40,000 titles while "Alzheimer" nets nearly 37,800.

With all these books about caregiving and Alzheimer's, why is so little attention focused on this disease and the families whose lives it turns inside out?

First, many caregivers are first-time authors who want to help others by sharing their experience. They try to get the word out by talking with friends, family, writing blogs online, and also by turning to the Alzheimer's Association. Surprisingly, the Alzheimer's Association has been turning down requests to review, endorse, or help promote others' titles. Years earlier, I was told and now, more recently by authors, that the Alzheimer's Association receives too many requests. One chapter representative told me, instead of risking offending one person, they're turning everyone down. I think this is a mistake because the Alzheimer's Association needs these grassroots partnerships from impassioned families promoting the cause.

Second, with significant budget tightening among the print and broadcast media, competition is growing fierce for airtime or print space. Consider the kinds of topics covered in the media today. It is said: If it Bleeds, it Leads. Or, these days, if it floods (Midwest) or burns (California), there will be coverage. Can you imagine Oprah Winfrey airing a provocative show around the JOYS of Alzheimer's? I think this would make a GREAT SHOW!

Third, those of us who serve families journeying down the road of dementia, caregiving, Alzheimer's, and other brain impairments are fragmented. There are so many websites, organizations, and resources, the already overwhelmed family member becomes confused: Where should I turn? Which resource is a credible resource? I don't have enough time to care for my loved one while trying to live my life! How can I find best organization to help me? Instead, today's caregivers forge ahead, reinventing how to best provide care despite the readily available information that could help them more easily provide better care.

We who serve these families need to integrate our resources (co-promote, review, refer) in order to present a more cohesive front to the family caregiver.

Incidents of Alzheimer's have increased 25% during the last decade. If we don't focus more attention on to this disease and the plight of family caregivers, we will witness an epidemic that will affect us.

The Caregiver's Voice has started by reviewing books and other resources sent to us in order to get the word out and to raise awareness. Additionally, we are partnering with others to increase awareness.

Will YOU join us?

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