ANNUAL HEALTH CARE ISSUE

THE OTHER END OF THE SPECTRUM: THE CENTER ON AGING, DEMENTIA AND LONGEVITY

BY PATTI WADE

Because individuals with disabilities are no longer ignored and shuffled off to institutions, because they are finally being embraced (mostly) as valuable members of our communities, they are begining to experience all the aspects of life that everybody else does. This is generally good. Many people with ID/DD can now expect a near normal life span. There are many challenges to aging for everyone, but a few special considerations if you have an intellectual or developmental disability. In the past we didn't worry much about old age in the disabilities world, because so few saw it. Now we need to be more aware.

I work in Chattanooga, Tennessee at Orange Grove Center, a 67year-old community provider agency offering the full spectrum of support services across the lifespan. We recognize that many of the individuals that we serve are getting older and we are seeing the positive and negative aspects of aging with special needs, and we have created The Center on Aging, Dementia and Longevity. The goal is to help people in old age do what you have tried to do all along, be healthy, happy and independent.

It was a long journey to get this Center opened and operating full time. Over 10 years ago I was working in our Supported Living department, assisting individuals with community living sitsuations. One of the men I supported, John Goodlet, was a delight (most of the time). He had Down syndrome, but was fairly high functioning and worked at his brother's restaurant. He was friendly, hard-working and could do a lot for himself. Staff dropped him off at work and picked him up, did his cooking and administered medications, but he was capable of many things. John had a housemate that he shared expenses with and most people would have considered his life to be a good one.

Over time, John began to change. At first it was just little things. He started hoarding aprons and spoons from the restaurant. We observed that he was begining to need more supervision while he worked. He needed support to stay on task and not be inappropriate with the customers. His hours were changed so that he came in before the restaurant was open and helped more with getting things ready. He had a 1:1 staff support with him. He started to have problems with his housemate, whom he had known for years. Eventually he needed to live alone, but with 24 hour staff. He was forgetful and resistant to staff reminding or helping him. His previously impecable dress and hygiene were not so GQ any more. He would only eat food from the restaurant. He lost weight. He started to wander off and did not want to come back with staff he didn't remember, especially the newer ones. He became somewhat aggressive, which had not been a previous issue with him.

We were confused. John was changing, at first slowly, then rather rapidly. I had not had any personal or professional experience with Alzheimer's or other dementias at that time, but soon it was obvious that John had something wrong. He was diagnosed with presumable Alzheimer's disease. I started to research how to support him. There was a lot of info on Alzheimer's and related dementias (ADRD), but not much as it applied to someone with Down syndrome or other disabilities. We did the best we could and learned from the seat of our pants. John was a dream on some days and a challenge on others. It was hard watching him change, but it taught me a lot about helping others go through this journey. John died on August 5th, 2008. He was 61 years old. I still miss him.

One of the best things about knowing John was getting to know his family. His parents were deceased by the time I met him, but he had two brothers and a sister, all who were involved in his life and all great people. After John passed away, they created a memorial fund at OGC. I was able to use the money they provided to get trained in "Dementia Capable Care" and become an instructor. My colleague, Dr. Rick Rader, also became an instructor.

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The class was geared toward the neurotypical population. We took the basic information and tailored it to the folks we supported. We added things our staff needed to know, to be able to support others who were begining to show signs of dementia. I learned that those with Down syndrome are much more prone to early onset Alzheimer's (before age 65). I learned that the early signs of ADRD are often different in people who have Down syndrome or other disabilities. I learned that they very often are not diagnosed early enough, if at all. I learned that there are treatable conditions that mimic the signs of dementia, but treatable only if we look for them. Older people will need increasing levels of care. Housing options that have always been difficult for this population become even more so. Employment becomes more challenging and finally impossible, making it a financial strain to afford what they need and want. Aging in place may or may not be an option. I learned that we, like most providers, are not prepared.

Since then, we have been trained to teach other programs. We combined all the information and expanded upon it. Dr. Rader and I were fortunate to have our friend and colleague, Amy Jo Schamens join us in teaching. She is a Behavior Analyst. I think the combination of a medical professional, a residental caregiver and a behavioral specialist makes an excellent combo. I am biased, but that does not mean that I am wrong! We train direct care and supervisory staff at our own organization, but also families, therapists, nurses and staff from other similar providers. We provide training for university undergraduate and graduate students from a variety of academic disciplines. We have trained Independent Support Coordinators and several people from the State regulatory agency. We have even had one class for the individuals themselves, many who are struggling with parents or house mates who are changing. My hope is to inform everyone.

LEADING TOPICS IN ID/DD AGING

Now finally, we have the funding to open the Center on Aging, Dementia and Longevity full time. We have focused primarily on dementia, but now we can look at all the other aspects of aging. We have started a balance program to help people stay more physically active and reduce falls. We are looking at ways to expand fun and functional activities, both in and out of the home for all ages, we are learning about the health needs of adults who have various diagnoses. There are age-related risks specific to Down syndrome, Fragile X, Cerebral Palsy, Prater Willi and almost every other syndrome or condition. These are things to educated ourselves (and even the medical community) about and to help our friends avoid or treat the issues of aging.

Families must prepare for after the parents are gone, because most of the "children" will out-live you. There has been a lot more research done in the last decade, but there still needs to be a lot more. I hope every individual, every family, and every community agency will start to look at aging and how to do so successfully. There is work to be done. •

ABOUT THE AUTHOR:

Patti Wade has worked at the Orange Grove Center (OGC) in Chattanooga, TN for 25 years. She is a Dementia Capable Certified Instructor and is the Director of OGC's Center on Aging, Dementia and Longevity. She is co-author of OGC's Comprehensive Dementia Care program training cirriculum, co-editor of "Memory Matters", an electronic newsletter providing current research and care advice about dementia and co-director of the Virtual Dementia Tour program at OGC. She oversees the Balance Programs, designed to improve and maintain balance and flexibility as people age. She is working jointly with the Southeast Area Agency on Aging and Dementia (AAAD) to provide community assistance for people with ID/DD and Dementia and training for their families and caregivers.