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«Developmental Services Resource Guide on Aging and Dementia Caring for Adults with Intellectual/Developmental Disabilities and Dementia Vermont ...»

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Developmental Services Resource Guide

on Aging and Dementia

Caring for Adults with

Intellectual/Developmental Disabilities and Dementia

Vermont Agency of Human Services

Department of Disabilities, Aging and Independent Living

This project was supported, in part by grant number 90AZ2768 from the US.

Administration on Aging, Department of Health and Human Services, Washington, D.C.

20201.Grantees undertaking projects under government sponsorship are encouraged to

express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.

Vermont Developmental Services Resource Guide on Aging and Dementia

TABLE OF CONTENTS

FOREWARD……………………………………………………………………………………………………………………… 1 How to use this guide…………………………………………………………………………………………………… 2 Acknowledgements………………………………………………………………………………………………………… 2 SECTION I: AGING…………………………………………………………………………………………………… 4 Quick Facts……………………………………………………………………………………………………………………… 4 SECTION II: DEMENTIA………………………………………………………………………………………… 7 Quick Facts……………………………………………………………………………………………………………………… 7 Frequently Asked Questions………………………………………………………………………………………… 7 Recognition and Diagnosis…………………………………………………………………………………………… 9 Early Recognition Checklist…………………………………………………………………………………………… 10 Care Planning and Treatment………………………………………………………………………………………… 11 Medications……………………………………………………………………………………………………………………… 14 Programs and Services ………………………………………………………………………………………………… 15 Challenging Behaviors…………………………………………………………………………………………………… 16 Behavior as Communication…………………………………………………………………………………………… 16 Common Behaviors and What They Might Mean……………………………………………………… 17 Changing Role of the DS Home Providers……………………………………………………………… 21 Self-care………………………………………………………………………………………………………………………… 21 Planning for the Future………………………………………………………………………………………………… 22 SECTION III: ONLY in Vermont…………………………………………………………………………… 23 Information, Referral and Assistance……………………………………………………………………… 23 Area Agencies on Aging………………………………………………………………………………………………… 23 Developmental Service Providers………………………………………………………………………………… 25 SECTION IV: ADDITIONAL READING………………………………………………………………… 31 Recommended Websites, Booklets, Other Materials……………………………………………… 31 Vermont Agency of Human Services Department of Disabilities, Aging and Independent Living 12/2008 Vermont Developmental Services Resource Guide on Aging and Dementia FOREWARD Adults with intellectual and developmental disabilities, their families and their supporters are growing older. There are many reasons for the increased life span of people with disabilities. These include the inner strength of persons with disabilities, advances in medical care and strong advocacy leading to better public policy. Perhaps most importantly, living longer comes from the efforts of families and developmental service support teams: clinicians, home care and other service providers and friends, who helped make supportive environments in the community.

Advocates in the developmental disabilities world have worked hard to make sure that children and adults with intellectual and developmental disabilities have had the opportunity and skills to join in the life of their communities. This has been especially true in Vermont, where family and professional caregivers have provided a lifetime of affection, support and care in the community. Making sure the person with a disability was seen and heard were key to success. What does he want? How far can she go? Who would she or he become? What could they do on their own? were the questions behind the support plans.

Now, as adults with intellectual and developmental disabilities grow older, they become more at risk for some disorders associated with aging, which may impact their hardearned skills. Problems such as cataracts, hearing problems and dementia may require finding a new balance between what a person can still do independently and what he or she needs us to do with or for them. Dementia due to Alzheimer’s disease is of special interest because adults with Down’s syndrome are known to be particularly vulnerable to this disease.





Watching an adult with dementia lose hard-won skills is very difficult: this is equally true for families and professional support persons. Supporting an adult who is more dependent or perhaps frustrated by choice may require you to adjust your expectations and to experience the disappointment and pain in the loss.

In some respects, meeting the needs of this aging population may not pose too big a challenge for the Vermont developmental services community. For years, the developmental services community has held person-centered care as a core value. The idea that “the person will be at the core of all plans and services” tops the list of core

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principles of the Department of Disabilities, Aging and Independent Living. Personcentered care means attending to the unique needs, wishes and dreams at each developmental stage of the lifespan. An older person likely has different wishes, dreams, needs and goals than she or he had at a different stage of life but that person remains at the center. Person-centered care is a continuing process of listening, trying things, seeing how they work and changing things as needed.

Using the principles of person-centered care, this resource guide is intended to support aging in place and to guide any developmental services (hereafter, DS) team that supports someone with dementia. Some sections will likely be more helpful to some members of the team than others. For example, some chapters are specifically directed towards DS home providers whereas others may be more helpful to service coordinators.

How to Use This Guide This guide is designed to make it easy to find answers to common questions and challenges.

Each section begins with a general overview of the topic or a set of “quick facts” to give some background. The overview is followed by some commonly asked questions and/or some suggestions for how to approach issues as they come up. A “want to read more?” insert guides the reader to more information.

If you are using the electronic version, scroll down to the heading of interest. If you’re using the print version, you can use the table of contents or just flip through the pages using the headings at the top.

This guide is designed to be easy to read and practical; it is not intended to be a comprehensive review. If you want to learn more, you will find a list of carefully selected resources that may help direct you.

Companion guides we recommend are: Helping the Helper – When a Loved One has Alzheimer’s available through the Vermont chapter of the Alzheimer’s Association and Developmental Disabilities and Alzheimer’s Disease – What You Should Know available through The Arc (www.thearc.org) Acknowledgements This resource guide was put together from many previously published materials. All materials are in the public domain unless otherwise noted. The authors are grateful for

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the extensive work that has been done by others and to The Arc, the Alzheimer’s Association, IASSID (International Association for the Scientific Study of Intellectual Disabilities) and AAMR (American Association on Mental Retardation) for making that work available.

Two sources deserve special recognition for their extensive contributions to the field of intellectual/developmental disabilities and dementia. They are the Center for Excellence in Aging Services University at Albany, NY and the Rehabilitation Resource and Training Center (RRTC) in Aging and Developmental Disabilities at University of Illinois at Chicago (www.uic.edu.orgs/rrtcamr/dementia).

Special thanks to the leaders in the DS community in Vermont who agreed to read, edit and comment on this resource guide. It is better because of your contributions.

And finally, this guide would not have been possible without the generous support of the Administration on Aging Alzheimer's Disease Demonstration Grant Program to States and the Department of Disabilities, Aging and Independent Living, Agency of Human Services, State of Vermont.

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SECTION I: AGING Why it helps to know about aging. Adults with intellectual and developmental disabilities are living longer. In the normal course of aging, changes occur in our senses (hearing, seeing, tasting, smelling and touch) in our bodies (muscles are less strong for instance), in our brains (we just don’t learn as fast) and sometimes in our behavior (we become a little more cautious). Understanding these changes as part of normal aging helps separate out changes associated with diseases like Alzheimer’s disease. Understanding the aging process allows you to meet the person where he is. This makes for true personcentered support.

Quick Facts 1 People With intellectual/developmental disabilities are living longer. We used to think that adults with intellectual/developmental disabilities (I/DD) simply died younger because of their disability. We now know that for many, the shorter life span had more to do with lack of medical care, limited rehabilitation, and poor living conditions. It is now common in most developed countries for adults with I/DD to live to old age. Even adults with Down’s syndrome, who used to have much shortened life-spans, are living longer.

In Vermont, 10% of the 3,329 persons with developmental disabilities served in 2007 by the Department of Disabilities, Aging and Independent Living were over the age of 60.

Adapted from the IASSID and AAMR Fact sheets which can be found on line or in the Additional Reading section of this guide.

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In general, older people with intellectual/developmental disabilities have the same needs as other older people. People with intellectual/developmental disabilities can get the same age-related impairments and illnesses as people who do not have life-long disabilities. They have the concerns of all aging adults—where to live, how to live as independently as possible, getting help when it is needed, staying healthy-in short, living happy, meaningful and productive lives. The situation is more complicated for some older adults with intellectual/developmental disabilities, because, on the whole, they may be more dependent on caregivers (family members as well as DS agency staff).

Older adults with Down’s Syndrome age prematurely. Older adults with Down’s Syndrome are unique among adults with developmental disabilities. Their skin changes sooner making it more likely to tear; their hair turns grey and thins out sooner; they go through early menopause; they lose hearing and get cataracts more often and sooner; and they have an increased risk and earlier onset of Alzheimer’s Disease.

Older people with intellectual/ developmental disabilities have a double stigma. Achievement oriented societies tend to devalue people Want to learn more?

whom they look at Turn to the back of this guide and read as not productive AAMR’s Fact Sheet: AGING or dependent. Older Adults and Their Aging Caregivers Youth centered IASSID’s Aging and Intellectual Disabilities societies add to this by not seeing Or check out the VT Division of Disabilities and Aging Services Annual Report on line at http://www.ddas.vermont.gov/ddasolder people as publications/publications-dds/publications-dds-documents/dds-publicat having much value.

annual-report/ds-annual-report-2008 Adults with developmental disabilities may find themselves encountering these negative perceptions as they grow older. Service coordinators and home providers may find this especially challenging when trying to get more services or medical care.

Aging adults with intellectual/developmental disabilities can remain in their homes.

Older adults with intellectual/developmental disabilities can age in place with proper support. There will be an increased need for services and supports whether they are living independently, with their families, or in other residential settings. These services include

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personal care services, assistive technologies, home health care, and other in-home supports. Assistive technologies often include mobility and communication devices, home modifications, and techniques for maintaining and improving functioning.

Older Vermonters with intellectual or developmental disabilities currently have access to two waiver programs that support living in the community: the DS waiver and the Choices for Care waiver. It is important when creating an individual support plan to make sure to consider which will work best for a given individual. An individual may only be enrolled in one waiver.



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