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Alzheimer's Association 14th Annual Public Policy Forum, April 27-30, 2002

Presentation by Jan/Mina Phillips

I share a common bond with you all and the rest of the world in that what is adverse in our lives propels us into action. I believe this is universal.

We face our daily trials, work for solutions, then get back on the merry-go-round of our lives -- until we are faced with an insurmountable crisis. For me the diagnosis of probable Alzheimer's Disease, was that crisis.

Alzheimer's was a living death sentence. I was sentenced to a daily loss of self, social standing and all the abilities I had taken for granted in the past. Already I had suffered so much loss that getting a diagnosis was imperative. No possibility of hope was offered for any type of future or meaningful life between diagnosis and death.

I'd like to share just a simplified brief outline of my journey from apathy to advocacy.

Many confusing and frightening occurrences started to become regular enough to cause me to go to our family doctor when I was 43, in 1993. They couldn't be wished away nor ignored. When all the medical reasons that he could find were ruled out, the doctor proposed a brain biopsy to check for dementia. At least I had the presence of mind to refuse that! Guess he thought he'd just do these random drilling sites since he had given me no neuropsychological testing.

I kept my concerns to myself, not sharing them with my family - I became more and more adept at covering up and making excuses for my lapses.

I actively sought my diagnosis in 1995 when news was shared by an Aunt that my uncle had passed from Alzheimer's Disease. It was as if a light bulb went off in my head; now what had been happening to me might be explained in a similar way, and the peculiar behaviors of my Mother and an Aunt might be explained as well. I knew nothing about Alzheimer's disease at that time. Being a new grandmother I was afraid of endangering my granddaughter. So I had to know.

I was 45, my husband 50; we were a long way from retirement. He had switched from the corporate world to begin a consulting firm in which I was the "word monger." I wrote business plans and the like. But I had found it increasingly difficult to be of any help.

I read a newspaper ad looking for volunteers to participate in anti-dementia drug studies. The outline they laid out as to symptoms seemed fit many of my concerns. So I called them. Like my doctor, they said I was too young, but agreed to see me and do the testing required for the research study.

They ran a full battery of neuro-psychological testing and bloodwork. As I passed the criteria for possible dementia they asked for an age waiver so that I too could be included in their studies. Two years later I went through a similar testing battery at UCI and had a MRI which confirmed dementia - I have been followed there for 4 years.

I feel very lucky to have become involved in the anti dementia drug trials at Pharmacology Research Institute or PRI, in Southern California. Obviously a patient-oriented, caring research facility, the staff insisted that we contact the Alzheimer's Association for support and further information on dementia.

This was to be my 1st step in changing from apathy to advocacy.

After being part of the Early Memory Loss group, I realized the value -- and my need for -- support, empathy and understanding, and yet I was frustrated by the lack of services and information available for early stage people with dementia or PWiDs. Pronounced to rhyme with kidz (that acronym was coined by DR. Morris Friedell, a fellow DASN international board member, who is here presenting in another workshop).

My daughter, dismayed at my apathy and depression spent the better part of an afternoon on the phone trying to find a support group for me. After a dozen calls she finally was referred to a 'wonderful young woman recently diagnosed who would be able to provide tremendous support'. Her excitement soon turned to a fit of the giggles when she revealed that wonderful young woman was me. She had been referred back to the very person for whom she was seeking support!

I had started keeping a journal of sorts about my dementia and shared it with Selly Jenny. (Selly is the founder of Memories in the Making, an art and self expression program for PWiDs.) Selly didn't give me a bit of sympathy. Her comments?

"So what now? It's obvious you are very angry - are you going to continue to whine and be a victim?"

That second step towards advocacy would be better described as a boot to the backside!

My husband made a huge third step possible when he set me up with the Internet. Timid at first, I found a wealth of information about dementia and many support groups for Carepartners, but there were none for people diagnosed with dementia. The carepartner boards were frightening as they dealt mainly with the problems of later stage PWiDs. This was an extremely traumatic time, although the effect of the disease was relatively subtle and sometimes almost imperceptible to others, for me it was so totally life altering. My inability to adjust without support was devastating to myself and my family.

Laura Smith, a PWiD living alone in a rural area of Montana, then contacted me. She had formed an online community called "Coping With Personal Memory Loss." There I found understanding and support and a lot of other angry people too, also struggling with the early stages of their diagnosis, and very frustrated with the lack of services and information available for the people with dementia themselves.

The fourth step towards my advocacy was the realization that in helping one another, we could turn lemons into lemonade, and, by golly, we were going to set up our own lemonade stand!

A group of nine of us with different illnesses causing dementia branched out from Coping With Personal Memory Loss to form a nonprofit corporation, the Dementia Advocacy and Support Network or DASN. The group formed to advocate specifically for services for early stage patients and their care partners. That was October of 2000.

Since then DASN has grown into DASN International, with a membership of over 160 in eleven nations worldwide. Our youngest member diagnosed with dementia is but 25 years old - definitely NOT an "Old Timer"! Her dementia is hepatitis-related. We at DASN are living history. The first generation of people with dementia to have received the new cognitive drugs like Aricept, Excelon and Reminal. As such we are the new face of dementia.

The majority of our membership have been diagnosed with various forms of dementia and the remainder of our membership is comprised of those temporarily able-brained individuals, or TABS as we refer to most of you, who support our principles, beliefs and values (brochure in your packet).

Our primary means of communication are the Internet, our website, twice daily chats and an email community which provides anonymity, time to interact at our own pace, and safe support for more complex and intimate issues. The DASN International board of directors has met face-to-face twice in the past two years. Being international, the location of our office has been a problem, so we tell the world we "telecommute" for board meetings.

Time is irreplaceable with an early stage PWiD both because they now know that their lives will be shorter and of less quality than they hoped, and because function lost prior to treatment can never be wholly recovered. Diagnosis and treatment are a race against time.

The odyssey through the medical establishment begins when you realize something "isn't right" with yourself. In spite of that, diagnosis can take up to a year, sometimes more, as you go from one doctor to another trying to find someone who will listen and not just summarily discount you because of your age or vagueness and inability to articulate the confusing changes occurring.

The medical profession needs to better educate general practitioners and the public at large about the early warning signs of dementia and about the neurological terms needed to describe the "problems" we experience. The general public now knows about the language of the heart. We know about systolic and diastolic blood pressures, arteriosclerosis, cardiac arrhymias and the like. Equally, we must be taught about neurological dysfunction. Agnosia, aphasia, apraxia, short and long term memory loss are not difficult concepts, but if one does not have the language to talk about one's experiences, one is rendered effectively mute, and diagnosis is often delayed.

As one DASN International board member in Australia puts it, "Treatment delayed is treatment denied" because the research clearly shows that when treatment is withheld even for a few months, the lost function is never fully recovered. Finding the right specialist and getting appropriate treatment seems never-ending and frustrating as one struggles with denial oneself, often becoming more depressed.

The best hope for early-stage people is early detection, immediate and aggressive drug intervention, early stage services and an empowerment approach. Rehabilitation, self-monitoring and management, and vocational or recreational therapy must be elements of the patient's tool-box for coping.

Counseling for grief and loss are also of enormous help in maintaining quality of life. Long before the diagnosticians detect our deficits, those of us in the early stages are well aware of the losses we have endured, despite our inability to describe them in ways practitioners can recognize. Delaying the diagnosis or delaying telling the early stage patient is not a kindness, any more than avoiding discovering and treating termites in the foundation of a house!

Early detection enables us to receive drug intervention. The drugs available now help to forestall the dementia's progression - many of us in DASN International actually refer to ourselves as the "Aricept Generation," having maintained a sound level of cognitive ability since starting on the drug when it became available 5 years ago. As well, drugs are available that can help us deal with apathy, depression, aggression, anger outbursts and other unacceptable social behavior.

PWiDs in DASN Int'l have told me that until getting into stabilizing medications, they would not even consider seeking any support, be it privately with a counselor or in a support group. Perhaps physically, as well as mentally, they were not feeling well enough to socialize and talk to others as apathy and social withdrawal can be significant early symptoms of dementia stemming from frontal lobe damage.

We at Dementia Advocacy and Support Network International are channeling our frustrations into empowerment and a sense of accomplishment. Educating ourselves and doing our best to affect changes for PWiDs worldwide. Our motto is "Think Globally - Act Locally."

Even in it's infancy DASN International has made a worldwide impact. In your packets you will find two proposals made by the DASN Int'l membership to Alzheimer's Disease International (ADI), an umbrella organization for the Alzheimer's Association in the United States and in sixty-four member nations worldwide. The first was presented just prior to ADI's world conference in October of last year in New Zealand.

ADI has praised our initiative and formed an international working group to which two DASN International members were appointed for further discussion on the implementation of our proposal.

The second proposal was made to the National Alzheimer's Association here in the US in February. DASN International board members were pleased to be able to meet with Kathleen O'Brian, National Vice President for Program Services, and executive members of the Orange County and Los Angeles chapters to discuss its future impact on the Alzheimer's Association and its chapters here in the United States. We look forward to our continued working relationship with the National Alzheimer's Association and its many chapters.

As I said initially, "Adversity propels us into action." For me my action has become a quest, my Holy Grail. There has been a continuing theme that keeps me motivated and that theme is preserving the health of my family (share four generation picture.) This is my daughter, my granddaughter and my mother. I am honored to say our picture has been featured in the Orange County newsletter, Memory Walk brochure and a membership invitation.

My quest is to see a cure and a vaccine for prevention. The legacy of Alzheimer's Disease needs to stop with my generation - this is an inheritance that should no longer be shared.

Also with my PWiD advocacy, I hope to make the way of those diagnosed after me easier and better supported in early stages within the Alzheimer's community.

I would like to say that my advocacy efforts locally and globally are supported by people and organizations that I consider carepartners in this journey, people who share my philosophy in regard to Alzheimer's Disease.

Carole Mulliken, my friend, carepartner and DASN Int'l. co-secretary who graciously shared thoughts, ideas and helped to clarify this talk.

And without the continued support and generosity of my carepartners at the Alzheimer's Association, and in particular the California chapters of Los Angeles and Orange counties, and the forward-thinking of executive directors, Peter Braun and Linda Scheck, my efforts would be greatly curtailed.

Most Alzheimer's conferences are filled with people who work within the "providers" industry. Not often do we reach the people who are most in need of the information, the consumer - the person with dementia, their carepartners. As advocates, we usually "preach to the choir," but during these next few days we have an opportunity to give testimony to those who in a great part enable us to sing. Together we have the power to affect change.

To date, the advocacy of people affected by dementia has helped to dramatically increase the amount of money available for research. The new cognitive drugs that are the result help people with dementia to live with enormously improved quality of life and productivity. I am one who has reaped those benefits.

However, it is now time to redirect our vigorous research energies toward a vaccine to stop Alzheimer's Disease in future generations, and to fund care for those diagnosed at earlier ages. Specifically, we must channel monies toward programs that will enable PWiDs to remain at home with their families longer and programs providing access to counseling, rehabilitative activities, innovative technological tools and timely medical services.

Just briefly I'd like to go over the handout in your packet which outlines ways in which you can become involved in advocacy and add to that list:

contacting the media in your town when a story breaks about dementia to give them your unique perspective.

Even those confined to their homes can still be advocates through hosting chats, developing e-mail communities, conducting letter writing campaigns to legislators, writing editorials for local papers, offering phone support, and so forth.

Opportunities within the Alzheimer's Association abound.

I invite you to join us in DASN International.

Take advantage of the many opportunities in your community, church, social clubs and so forth …

You need not be limited by any existing barriers. DASN International has accomplished amazing things without an office, without a budget, or paid executives. It shall take the imaginations and creative energies of us all to bring about the kind of change needed to conquer dementia.

In closing I implore you to not only add to this list, but share it as well with others who can share with us in our advocacy's.

Thank you.