Setting a Roadmap to Address Alzheimer's in the Commonwealth:

86 Pages·2008·0.75 MB·English

Setting a Roadmap to Address Alzheimer’s in the
Commonwealth:

A Report on the Assessment of the Current and
Anticipated Future Impact of
Alzheimer’s Disease and Related Dementias
on Kentuckians with Recommendations for Action

Submitted in Response to SJR 6

By

The Office on Alzheimer’s Disease and Related Disorders and
Kentucky Alzheimer’s Disease and Related Disorders Advisory Council

Date XX, 2008
January 15, 2008

Honorable David Williams, President, State Senate
Honorable Jody Richards, Speaker, State House
General Assembly, Commonwealth of Kentucky
State Capitol, Frankfort, Kentucky

Dear President Williams and Speaker Richards,

We are pleased to submit this assessment of the current and future impact of Alzheimer’s on the
Commonwealth of Kentucky, as required by Senate Joint Resolution 6 passed in the 2007 Session. This
report reflects the work and input of volunteer and paid stakeholders and state staff who spent seven
months studying the needs of Kentuckians with Alzheimer’s disease and their families, surveying state
services and resources, and analyzing ways to improve the Commonwealth’s response to this public heath
crisis.

As the large baby-boom cohort of Kentuckians enters the age of greatest risk for Alzheimer’s, the impact
is going to be staggering on families, on our health care system, communities, public safety and long term
care resources.

We urge every member of the General Assembly to read this report: “Setting a Roadmap to Address
Alzheimer’s in the Commonwealth: A Report on the Assessment of the Current and Anticipated
Future Impact of Alzheimer’s Disease and Related Dementias on Kentuckians with Recommendations
for Action.”

In it, you will find that needed data and statistics about Kentucky’s population with Alzheimer’s are
sorely lacking. So how is the Commonwealth to embark upon sound planning to address the needs of
individuals and families living with this disease?

In it, you will find that there is no functioning entity within state government that can coordinate
information, services or policies related to Alzheimer’s and related dementias. With a badly out-dated
statutory basis and insufficient resources, the Alzheimer’s advisory council and office are ill-equipped to
take on the important charge envisioned in this Report to continue to assess needs, establish training and
practice protocols, encourage coordination among state agencies, and serve as a clearinghouse for up-to-
date information and resources.

This Alzheimer’s state plan includes recommendations for ways to address these issues and to enhance
existing state programs, improve the quality of dementia care across the array of services, help family
caregivers, and encourage research on Alzheimer’s disease and care practices. We urge the General
Assembly to take action with legislation as appropriate and to monitor the state government response to
this report.

Respectfully submitted,

Tonya M. Cox, MSW Jane M. Thibault, PhD
Co-Chairs, State Advisory Council on Alzheimer’s Disease and Related Disorders.

Enc.: “Setting a Roadmap to Address Alzheimer’s in the Commonwealth: A Report on the Assessment of the Current and
Anticipated Future Impact of Alzheimer’s Disease and Related Dementias on Kentuckians with Recommendations for Action”

Kentucky Advisory Council on Alzheimer’s Disease
Workgroups

Community Services

Nancy Addington Elisa Freeman-Carr Robynn Pease, PhD
Lincoln Trail Area Agency Alzheimer’s Association Work life
on Aging Louisville, KY University of Kentucky
Elizabethtown, KY Lexington, KY

Debra Burchett Officer Steve Gaunce Dona Renfro
United Mine Workers Project Lifesaver Lexington, KY
Association Lexington Fayette Urban
Prestonsburg, KY County Government,
Division of Police
Lexington, KY

Rhonda Davis Barbara Gordon Representative
Bluegrass Area Agency Kentuckiana Regional Susan Westrom
on Aging Planning & Development Lexington, KY
Lexington, KY Agency
Louisville, KY

Bud Dixon Debbie McCarty
Jefferson county Search Dog Barren River Area Agency
Association on Aging
Louisville, KY Bowling Green, KY

Donna Frazier Bill Nighbert
Big Sandy Area Agency Frankfort, KY
on Aging
Prestonsburg, KY
Health and Health Services

Stephen Combs Aletha Malone Joseph Smith
Cumberland Valley District Alzheimer’s Association Kentucky Primary Care
Health Department Lexington, KY Association
Pineville, KY Frankfort, KY

Carol Hall Marnie Mountjoy Cris Sparks
Department for Aging and Department for Aging and Department for Public Health
Independent Living Independent Living Frankfort, KY
Frankfort, KY Frankfort, KY

Mary Ann Hirschler Phyllis Parker Sue Thomas-Cox
Department for Aging and Department for Mental Health Department for Public Health
Independent Living and Mental Retardation Frankfort, KY
Frankfort, KY Services
Frankfort, KY
Long Term Care Residential

Alan Beuscher Ruby Jo Cummins Charletta Parker, CNA
Wesley Village Lubarsky Masonic Homes of Kentucky
Wilmore, KY Kentucky Association of Louisville, KY
Health Care Facilities
Louisville, KY

Tonya Cox Margaret McCoskey John Underwood
Alzheimer’s Association Liberty Ridge Kentucky Association of
Lexington, KY Lexington, KY Assisted Living Facilities
Buckner, KY

Sherry Culp Judy Montfort Kathy Wiederhold
Nursing Home Ombudsman Division of Long-Term Care Masonic Homes of Kentucky
Agency of the Bluegrass Frankfort, KY Louisville, KY
Lexington, KY

Keith Knapp, PhD Nancy Orr-Rainey Ray Dickson
Christian Care Communities Louisville, KY Kentucky Association of
Louisville, KY Not-for-Profit Homes and
Services for the Aging
Louisville, KY
Long Term Care Home & Community Based Care

Nancy Addington Tonya Cox Karen Hinkle
Lincoln Trail Area Agency Alzheimer’s Association Kentucky Home Health
on Aging Lexington, KY Association
Elizabethtown, KY Lexington, KY

David Bassoni Phyllis Culp Karen Robinson
Bluegrass Area Agency Department for Aging and University of Louisville,
on Aging Independent Living School of Nursing
Lexington, KY Frankfort, KY Louisville, KY

Bruce Carver Joe Evanko Kay Williams
Pennyrile Area Agency on Alzheimer’s Support Group The Kentucky Association of
Aging Leader Hospice and Palliative Care
Hopkinsville, KY Mayfield, KY & Lourdes Hospital
Paducah, KY
Disease Background

Arlene Johnson Steve Olding Mike Smith, PhD
University of Kentucky Alzheimer’s Association University of Kentucky
Council on Aging Cincinnati, OH College of Public Health
OVAR/GEC Lexington, KY
Lexington, KY

Ellen Kershaw
Alzheimer’s Association
Louisville, KY

Research

Roberta Davis Fred Schmitt, PhD Dr. Jane Thibault, PhD
Alzheimer’s Disease Center Alzheimer’s Disease Center Family & Geriatric Medicine
Sanders-Brown Center on Sanders-Brown Center on University of Louisville
Aging, University of Aging, University of Louisville, KY
Kentucky Kentucky
Lexington, KY Lexington, KY

Dr. Greg Jicha, MD, PhD Ben Schoenbachler, M.D. Deborah Danner, PhD
Alzheimer’s Disease Center University of Louisville, Alzheimer’s Disease Center
Sanders-Brown Center on Department of Psychiatry and Sanders-Brown Center on
Aging, University of Behavioral Sciences Aging, University of
Kentucky Louisville, KY Kentucky
Lexington, KY Lexington, KY
TABLE OF CONTENTS

EXECUTIVE SUMMARY x
RECOMMENDATIONS AND STRATEGIES xvii

CHAPTER 1: INTRODUCTION 1
Organization of the Report 1
Trends in Alzheimer’s Population and Needs 1
Alzheimer’s Disease 1
Warning Signs of Alzheimer's Disease 2
Stages of Alzheimer’s Disease 3
Prevalence Estimates 5

CHAPTER 2: CURRENT AND FUTURE IMPACT 7
State Role and Infrastructure 7
Kentucky Department for Aging and Independent Living 7
Alzheimer’s Association 8
Office on Alzheimer’s Disease and Related Disorders 9
Alzheimer’s Disease and Related Disorders Advisory Council 9
Healthy Kentucky 2010 9
Cabinet for Health and Family Services Plan 10
State Plan on Aging 10
Existing Services 11
Type, Cost and Availability of Services 11
Capacity of Public Safety & Law Enforcement 13
Availability of Home and Community Based Resources 14
Inventory of Long-term Care Special Dementia Units 36
Adequacy and Appropriateness of Geriatric-Psychiatric Units 36
Assisted Living Residential Options 36
Research 37
National Resources 37
State Resources 38
University of Kentucky 38
University of Louisville 39
State Agency Support and Studies Specific to Kentuckians 39
Evidenced Based Practices 40

CHAPTER 3: IDENTIFIED CHALLENGES AND RECOMMENDATIONS 42
State Role and Infrastructure 42
Recommendation 3.1 and Strategies 45
Recommendation 3.2 and Strategies 46
Recommendation 3.3 and Strategies 47
Recommendation 3.4 and Strategies 47
Recommendation 3.5 and Strategies 49
Recommendation 3.6 and Strategies 49

x
TABLE OF CONTENTS

Programs and Services 50
Recommendation 3.7 and Strategies 51
Research and Evaluation 52
Recommendation 3.8 and Strategies 53
Recommendation 3.9 and Strategies 53
Recommendation 3.10 and Strategy 54

LIST OF TABLES

Table 1. Expenditures Related to Respite Services 11
Provided In-Home and at Adult Day Care Centers

Table 2. Average Medicare Costs for Beneficiaries Age 65+ with 12
Alzheimer’s Disease and Related Dementias Who Had
Specified Coexisting Medical Conditions, 2000

Table 3. Stages of Alzheimer’s Disease, Current Medicaid and Non 15
Medicaid Services and Gaps in Services Specific to Kentucky

Table 4. Stages of Alzheimer’s Disease and Service Payor Sources 26

APPENDICES

Appendix A: Glossary of Terms 56
Appendix B: Senate Joint Resolution 6 57
Appendix C: Certain Evidence Based Training Curricula for Caregivers 59
of Individuals with Alzheimer’s Disease and Related Dementias
Appendix D: Department for Aging and Independent Living Research 62
and Program Evaluation Activities
xi