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April 1, 2008 12:59 p.m.

A journey shared by many

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By Angela Lunde

Over the weekend, I was involved in a statewide dementia conference on Alzheimer's disease (and related dementias) for families, caregivers, professionals in the field, as well as persons with early stage dementia.

More than 1,000 gathered to learn about AD research, early identification, medication and treatments, coping strategies, services, advocacy efforts and other topics. Of maybe greater importance, participants heard personal stories shared by persons with Alzheimer's disease and/or their care partners.

It was clear to everyone in attendance that there are no easy answers to this heartbreaking disease. Yet, at the end of the day, the voice of Alzheimer's disease was heard, a grieving family was better understood, and a community inspired to action was created.

I write this today to let each of you know that you are not alone on this journey, even though I realize isolation is felt by so many. I know as a nation we have created a system that does not work well for people with chronic conditions and is even less effective for people with dementia. But we are moving forward in research, treatments, advocacy — all aimed at supporting families and persons with the disease to live better lives.

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4 comments posted

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April 23, 2008 11:49 a.m.

My dad has dementia due to hydrocephalus. So far they haven't had to due a shunt and no alzheimers. How likely is it to get worse since he has no hobbies and now doesn't work? He does doctor w/Mayo/MN

- Nicole T

April 10, 2008 9:57 a.m.

A note to Kathy who sent a posting on April 10: Kathy, I enjoyed taking a look at your site and appreciate the information and 'lighter side' you offer caregivers and families, well done!! Anyone who wants to check it out, here is the link: www.knowitalz.com

- Angela Lunde, MayoClinic.com

April 10, 2008 7:05 a.m.

My name is Kathy, and I am the primary caregiver for my 79 year old Dad who has Alzheimer's disease and lives with me in North Carolina. I am writing a daily blog on my Alzheimer's caregiver website that shows the lighter side of caring for someone with dementia. I have also added over 100 pages of resources for caregivers that I have gathered over the three years Dad has lived here. In addition, we have a live CHAT for caregivers every Tuesday night at 7pm EST, so that caregivers will know they are not alone, and get information and support. Please pass this link along to anyone you feel would enjoy or benefit from it. http://www.KnowItAlz.com Thanks, Kathy

- Kathy Hatfield

April 7, 2008 9:57 p.m.

Thank you for these comments. My Dad has this disease. It is incredibly sad .. he is very brave .. I often see his humor and personality still coming through and I am encouraged by it. He contributse so very much to my life even through this.

- Carolyn