Spotlight: Carole Mulliken

Spotlight: Carole Mulliken Nonprofit: A founding member and former vice president of Dementia Advocacy Support Network (DASN) International Access DASNI Daily Chats to join the community and ask questions. Diagnosed with dementia: in 1995 Work and Advocacy: I teach about early-onset dementia, and provide volunteer support, comfort and empowerment for isolated people with dementia.

Tell us about DASN International. How did it start?

Laura Smith, a Montana resident with memory loss, started a Yahoo group called Coping with Personal Memory Loss. She collected about 15 people seeking answers to their own memory loss. Sharing in chat rooms, these people discovered they were all hearing the same things from their doctors: “It’s just depression, stress, menopause…” Or, “You’re too young, you can’t have Alzheimer’s.”

Yet, when sent for neuropsychological evaluations in addition to blood work, family histories and brain scans, specialists always confirmed their suspicions. I was among that group. We saw a need to educate primary care physicians as well as the public, so we incorporated as a non-profit.

What’s dementia like for you?

I have vascular dementia rather than Alzheimer's disease. I feel great frustration with the abilities and competencies I’ve lost. I think extremely slowly, and become inflexible once I’ve decided something. I can’t do crafts anymore, or write creatively and deeply. I have to drag out the words whereas before they tumbled out faster than I could write. I lose everything. I have almost no memory of faces. I don’t recognize people I’ve met, particularly if I’ve met several in one day. I lose track of time. I live with three or four tiny alarm clocks that signal meals and bedtime. I sometimes need help with medications. Most of all, I miss the freedom of living alone easily. I miss feeling confident.

How are you treating your dementia?

I take Aricept, Namenda, antidepressants and sometimes sleep medications. I also stay away from artificial sweeteners, which are neurotoxins, and I take fish oil and vitamin B. I also try hard to stay mentally active. I’ve had some cognitive retraining, and I work on the Internet much of every day.

Is the disease stoppable? The damage reversible?

Generally, it’s not stoppable, no. In diabetics, the best hope is tight blood pressure and blood sugar control. I work on both. That may slow the progression, according to some doctors.

The damage isn’t reversible, but some (including myself) believe the benefits of neuroplasticity can be used to relearn some things -- the way a stroke victim might – that’s cognitive rehabilitation. But it saddens me that so few people with dementia are offered this retraining.

How does dementia differ from Alzheimer’s?

While dementia (or vascular dementia, or VaD) has different causes, the symptoms are very similar. And many people have mixed dementias. They have a little VaD and a little Alzheimer’s.

What was your motivation for starting DASN International?

I needed a diagnosis and to find help. We found each other and in the process of working together, found that helping each other was the best help we could receive.

Our vision is to promote respect and dignity for persons with dementia; to provide a forum for the exchange of information; and to encourage support mechanisms such as local groups, counseling groups and Internet linkages. We also advocate for services for people with dementia and assist people in connecting with their local Alzheimer’s Association or with the Alzheimer’s Foundation of America.

What are your long-term goals?

To live independently, to advocate for others and to ensure my family and DASNI both know how grateful I am for their help.

Who do you admire most in the dementia/Alzheimer’s community?

There are so many. I’m particularly grateful for Mary Lockhart, our faithful chat coordinator, Christine Boden Bryden of Australia and Morris Friedell, Ph.D.

Christine was the first person with dementia to be elected to the Board of Directors of Alzheimer’s Disease International, and she wrote one of the best books about living with dementia, called Dancing with Dementia. She describes dementia in a positive way by saying we’re on “an important journey from cognition through emotion and finally into Spirit.”

Christine is a scientist, so the neuropsychology of that statement is correct. Spiritually, it makes our difficult journey make sense. And that theme -- the emergence of the spirit in dementia -- now appears in many places in the literature.

Dr. Friedell is a psychology professor diagnosed with Alzheimer’s. His independence of spirit has fostered many creative approaches to rehabilitation for people with dementia. His science background and social/psychology training gives us the proper terminology for talking about our intentions.

What do you wish you’d known at the start of this journey?

That I had a diagnosable illness! For eight years, all I knew was that I was getting worse and worse at all the things I had been successful at before. I beat myself up for becoming lazy, indifferent, and negligent. It was a relief to know the real reason so I didn’t have to feel like such a bad person anymore.

What areas of research are you most excited about?

While I’m glad for the medications, I’m most excited about neuropsychological rehabilitation investigations, stem cell research and psychosocial support programs.

Are you involved in any clinical trials?

Yes, I’m participating in clinic research of neurofeedback to treat frontal lobe damage. This is where the executive functions take place -- the problem-solving, decision-making, focusing, setting priorities, and properly regulating emotions. I know I have frontal lobe damage (at minimum) because my emotions go on rollercoaster rides like that of a 13-year old. I must walk a fine line between being bored and utterly overwhelmed. There’s little space between the two extremes.

Who are you working with?

The Quiet Mind Foundation is conducting research into using neurofeedback, and my trainer is Dr. Jon Frederick.

What do you want people to better understand?

That dementia is not mental illness. It’s caused by brain damage or the death of neurons (cells). Thus, it’s a form of organic brain damage – and very different from chemical imbalances, for example. Others will never truly understand what it’s like from the inside, and I hope they never have to. But the answer lies in supporting and empowering dementia victims; in keeping them home for as long as possible, as long as they’re aware of their surroundings.

Where do you turn for support?

No question, I turn to my family, my two best friends, and to DASN International. The DASNI support allows me to better understand what was happening to me.

Can you explain?

None of my family or my friends knew much about dementia or neuropsychology. DASNI taught me about the types of specialists I’d need to see to get evaluated, about the medications I’d be prescribed, and about the ordeal of receiving disability insurance if needed. As important, I could e-mail someone any time and chat twice a day about what I was going through. That level of support would have worn out my family and friends. A counselor would have helped, too, but I couldn’t afford one at that point.

What are the biggest challenges in running DASNI?

Because there’s still so much ignorance about dementia, it’s tough to provide newcomers with encouragement and advice in fresh ways. I’d like to see more leadership emerge, but the longer the original group leads, the more convinced newcomers with dementia are that we’re irreplaceable. We aren’t.

How has dementia changed your career?

It’s robbed me of my career and any possible income forever. I was a high school teacher and counselor and retired on disability in 2000. But now I teach about early-onset dementia, and I provide volunteer support, comfort and empowerment for isolated people with dementia. Like public school teaching, the pay is lousy, but the rewards are considerable.

Finding other things to do so I could feel useful again was a huge challenge. DASNI helps me feel like I can provide something of use.

Learn more about Carole.

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