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Posted: September 22, 2004

Professional Caregiving

'No One Asks Us Anymore' -- Inspiration from Those with Dementia

I had the opportunity to interview a remarkable woman who has much to teach us. Her training and career before retirement was teaching high school English and, subsequently, counseling the students.

Only 56, she retired 4 years ago when her memory and long-used skills began to diminish, and despite years of assessment, she only got her diagnosis last year.

Initially, they thought it was vascular dementia, as she had the three conditions most closely tied to vascular dementia -- hypertension, diabetes and cardiovascular disease. The most recent primary diagnosis is hypoglycemic encephalopathy, or brain damage due to periods of extreme low blood sugars. (Vascular dementia is a secondary diagnosis.)

In these four years, however, Carole Mulliken, of Washington, Missouri, worked with peers to establish the nonprofit corporation, The Dementia Advocacy and Support Network International (DASN International), whose primary goal is to provide psycho-social support networks via the computer for folks with dementia and their families.

Today, Carole is vice-president of the organization that facilitates twice a day internet ?chats? during which they share, offer advice and referrals, vent and simply shmooze with each other, having one thing in common, a dementia diagnosis or condition. Oh yes, and that since their diagnosis, they share in the frustration that ?No one asks us our opinions, anymore.?

I will say that the first time Carole and I spoke, I certainly had no idea she had a diagnosis of dementia, and when that worked its way into the conversation, I was doubly amazed.

Carole has found in her work with DASNI that her greatest challenge is to help care partners understand the normalcy of people with dementia. There are so many normal things about them, and yet too often, once the diagnosis is known, others look only for the scary parts and strange behaviors associated with dementia they have heard about.

By the way, the term "care partner" istheir PC term for caregivers AND those with the dementia, who, as Carole says, both give to each other love and caring, and this keeps the language of the relationship equitable.

Carole believes that when taken individually, most of the ?odd? behavior people with dementia exhibit is actually healthy and understandable adaptations for living with a damaged brain, and most people with dementia can be easily managed if one stops ?projecting? their own fear of dementia on them.

She finds an enormous amount of satisfaction and inspiration when she sees families experience the positive effect of treating their family member as capable of participating in their own life decisions, able to be involved socially with others and worthy of respect for what they have accomplished in their lives. She spoke of the motivation she receives when care partners turn to her for help in understanding their spouse or family member.

DASNI has 249 members, of whom 12 or more members chat with one another daily online. This, for Carole, is a success she has been a part of, and she prides herself on it. Care partners follow DASNI's chats and read their message boards, and they tell the group how much the shared insights of those with dementia have helped in the care they provide. This group has members representing at least 10 countries, and it boasts two group members, who, for the last three years have been the plenary speakers at the Alzheimer's disease international annual convention held each year in a different country.

DASNI now has individuals with dementia sitting on boards of organizations such as Alzheimer's Disease International (ADI), which is the umbrella organization for Alzheimer's groups such as the Alzheimer's Association in more than 66 countries throughout the world. DASNI's motto is ?Nothing About Us, Without Us!?

Carole told me a story about their president, Lynn Jackson of Canada, who despite the symptoms from Pick's Disease and Parkinson 's symptoms, is moving along with a work group of professional care providers, developing policies and procedures for ADI.

Ms. Jackson is scheduled to speak at ADI 2004 to be held in Kyoto, Japan, later this year. Another friend and person with dementia on DASNI's board of directors and the board of directors for the Alzheimer Society in Canada has raised money for ADI by climbing Mount Kilimanjaro.

Carole also detailed the story about another colleague, who had been the Australian Prime Minister's Advisor on Science and Technological Advances. Now on the board of the ADI, she always contacts the DASNI group for input on topics being addressed so she is truly representing the needs and issues faced by her compatriots. She has dementia also, and had to retire, yet despite this, went back to school and to get a master's degree in counseling, started support groups for people with dementia, and has written two books, Who Will I Be When I Die? and Dancing with Dementia. This woman, Christine Bryden, also travels internationally and speaks on behalf of people with dementia. Pretty inspiring stuff here, I'm sure you'll agree.

There are some professionals now who are realizing that this group may have the most important information not yet mined as we plan and strategize for care solutions for the burgeoning numbers of people who will be diagnosed with dementia in these next decades. Understanding the minds of those with dementia will help all of us provide better care, more sensitive care. Let's be the first to ask our customers and their advocate counterparts, ?What haven't we asked yet and what is their opinion of that?? It will be a rude awakening for many of us, but one we need.

To share this resource with your clients with dementia and their care partners, who are seeking support from peers, you can find the group's chat at www.alzinfo.org. I also encourage you to visit DASN International. Several other DASNI members have written books. Their titles can be found at their website.

Let's not forget to ask the most important person, the one we are caring for, for their invaluable input. Their answers can be eye-opening as I found with Carole.

_____

Sylvia Nissenboim is a licensed clinical social worker and who has been working in the field of adult day services in the St. Louis area. She is the director of four adult care and enrichment centers for the American Red Cross and also operates a personal and professional coaching firm, LifeWork Transitions, specializing in caregiving concerns, adult day care management and other aging services, such as virtual coaching and family care giving support groups. She co-authored The Positive Interactions Program, is a national speaker, and has served as president of the Missouri Adult Day Care Association and as a member of the Missouri Governor's Advisory Council on Aging..

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