Florida Alzheimer's Disease Initiative

150 Pages·2012·2.75 MB·English

Florida Alzheimer’s
Disease Initiative
E d u c a t i o n M a n u a l
Understanding & Dealing With Alzheimer’s
Disease & Related Disorders
This Education Manual is dedicated
to the heroic families who are
dealing with the challenges of
Alzheimer’s disease or related
disorders in loved ones.
For additional information regarding this Education
Manual, please contact :
leilani doty, Phd
Director, University of Florida Cognitive
& Memory Disorder Clinics
Box 100236, Department of Neurology
McKnight Brain Institute
Gainesville, FL 32610-0236
Direct line: 352-273-5620
Office phone: [phone]
Fax: [phone]
E-mail: [email protected]
Mary Hodges
Chief, Bureau of Community & Support Services
Division of Statewide Community-Based Services
Department of Elder Affairs
4040 Esplanade Way
Tallahassee, FL 32399-7000
Phone: [phone]
Fax: [phone]
E-mail: [email protected]
carol W. Waters, Phd
Senior Management Analyst II
Bureau of Community & Support Services
Department of Elder Affairs
4040 Esplanade Way
Tallahassee, FL 32399-7000
Phone: [phone]
E-mail: [email protected]
II | Florida Alzheimer’s Disease Initiative
Table of Contents
introduction ...........................................................................................................................1
chapter 1: How the Brain Works ...........................................................................................7
The Brain .............................................................................................................................................................8
Summary ...........................................................................................................................................................11
chapter 2: daily Health tips ...............................................................................................13
Basics of Daily Health .......................................................................................................................................13
Exercise ..............................................................................................................................................................15
Sense of Purpose ................................................................................................................................................17
Relieve Stress ......................................................................................................................................................18
Regular Medical Checkups ................................................................................................................................19
Summary of Healthy Living ..............................................................................................................................20
Reading Suggestions ..........................................................................................................................................20
chapter 3: a Full Medical Exam ..........................................................................................23
A Full Medical Exam .........................................................................................................................................23
Summary ...........................................................................................................................................................25
National Resources ............................................................................................................................................26
References ..........................................................................................................................................................26
chapter 4: Firming up the diagnosis ...................................................................................27
State of Florida Brain Bank ................................................................................................................................27
History of Alzheimer’s Disease Initiative State of Florida Brain Bank ................................................................28
Application Process ............................................................................................................................................29
Acceptance to the Program ................................................................................................................................30
Reasons for a Brain Autopsy ..............................................................................................................................30
Summary ...........................................................................................................................................................31
References ..........................................................................................................................................................31
chapter 5: Mild cognitive impairment (Mci) ....................................................................33
Mild Cognitive Impairment (MCI) ...................................................................................................................33
Brain Cell Changes ............................................................................................................................................34
The Medical Evaluation .....................................................................................................................................35
Planning Ahead .................................................................................................................................................36
Tips for Dealing With Mild Cognitive Impairment (MCI) ...............................................................................37
Assisting Other People Who Have MCI ............................................................................................................38
Summary ...........................................................................................................................................................38
National Resources ............................................................................................................................................39
References ..........................................................................................................................................................39
chapter 6: Fixable Memory disorders (Fixable dementias) ................................................41
Early Memory and Thinking Changes ...............................................................................................................41
Full Medical Check-Up As Soon As Possible .....................................................................................................42
A Full Medical Exam .........................................................................................................................................43
Summary ...........................................................................................................................................................44
National Resources ............................................................................................................................................45
References ..........................................................................................................................................................45
Understanding & Dealing With Alzheimer’s Disease & Related Disorders | III
chapter 7: alzheimer’s disease overview ............................................................................47
Alzheimer’s Disease ............................................................................................................................................48
Stages of Alzheimer’s Disease .............................................................................................................................50
Summary ...........................................................................................................................................................51
Recommended Reading .....................................................................................................................................51
References ..........................................................................................................................................................52
chapter 8: comparing: alzheimer’s disease,
cardiovascular dementia, & lewy Body dementia ..............................................................53
Introduction ......................................................................................................................................................53
Alzheimer’s Disease ............................................................................................................................................53
Cardiovascular Dementia ...................................................................................................................................54
Lewy Body Dementia (LBD) ............................................................................................................................55
Medical Exam and Treatments for Progressive Dementias .................................................................................56
Planning Ahead .................................................................................................................................................58
Summary ...........................................................................................................................................................60
chapter 9: communication .................................................................................................61
Basics of Communication ..................................................................................................................................61
Progressive Communication Disorders ..............................................................................................................62
Communication Tips ........................................................................................................................................63
Summary ...........................................................................................................................................................66
chapter 10: Helping With daily Personal care ...................................................................67
Supporting Self-Sufficiency ................................................................................................................................67
About the Caregiver ...........................................................................................................................................68
Problems With Eating .......................................................................................................................................70
Bathing ..............................................................................................................................................................71
Dressing .............................................................................................................................................................71
Walking and Body Movement ...........................................................................................................................72
Sleeping .............................................................................................................................................................73
Toileting ............................................................................................................................................................74
Summary ...........................................................................................................................................................74
Resources and Recommended Readings ............................................................................................................76
chapter 11: Strategies for Behavioral challenges ................................................................77
Behavioral Challenges ........................................................................................................................................77
Validation Therapy ............................................................................................................................................78
Simple Ways to Deal With Behavioral Problems ...............................................................................................79
Problem-Solving in Three-Steps ........................................................................................................................80
Sleep Difficulties ................................................................................................................................................85
Ideas for Rewards ...............................................................................................................................................88
Summary ...........................................................................................................................................................88
References ..........................................................................................................................................................89
chapter 12: activities for You & Your loved one ................................................................91
General Principles ..............................................................................................................................................91
Activity Suggestions ...........................................................................................................................................92
Summary ...........................................................................................................................................................94
Recommended References with Activity Ideas ...................................................................................................94
IV | Florida Alzheimer’s Disease Initiative
chapter 13: Family issues ...................................................................................................97
Attitudes and Feelings About Caregiving ...........................................................................................................97
Tips and Techniques ..........................................................................................................................................97
Common Family Issues .....................................................................................................................................98
Helping the Family ............................................................................................................................................99
Loss ..................................................................................................................................................................100
Three Stages of Grief ........................................................................................................................................101
Summary .........................................................................................................................................................102
Recommended Readings .................................................................................................................................102
chapter 14: Stress Management for caregivers .................................................................103
Caregivers ........................................................................................................................................................103
What are the Symptoms of Caregiver Burnout? ..............................................................................................104
Skill Building ...................................................................................................................................................105
Coping Styles and Impact on Stressors ............................................................................................................105
Behavioral Approaches to Manage Stress .........................................................................................................106
Make Time for Yourself ...................................................................................................................................107
Summary .........................................................................................................................................................108
References ........................................................................................................................................................108
chapter 15: driving & Progressive dementia ...................................................................109
Three Sections of This Chapter: .......................................................................................................................109
Section One: Safe Driving ...............................................................................................................................109
Plan Ahead: You likely will outlive your ability to drive safely! ........................................................................111
Section Two: Safe Driving and Mild Cognitive Impairment ...........................................................................112
Are You a Safe Driver? .....................................................................................................................................113
Section Three: Safe Driving and Alzheimer’s Disease .......................................................................................115
Impact of Decline on Driver Safety .................................................................................................................116
Steps to Report an At-Risk Driver ...................................................................................................................119
Summary .........................................................................................................................................................120
Listings of Important Resources ......................................................................................................................120
chapter 16: Ethical issues & caregiving ............................................................................123
Basics of Ethics ................................................................................................................................................123
Virtue ..............................................................................................................................................................125
The Impact of Decline Over Time ...................................................................................................................126
General Strategies for Ethical Caregiving .........................................................................................................129
Summary .........................................................................................................................................................130
References ........................................................................................................................................................131
chapter 17: Free Resources: Websites, Phones,
Educational information, & Materials ...............................................................................133
National General Resources .............................................................................................................................133
Websites About Research and Clinical Trials....................................................................................................134
National Resources about Driving and Safety Issues ........................................................................................135
Educational Websites About Driving and Safety Issues ....................................................................................135
Free Booklets About Driving Issues .................................................................................................................136
General Reading ..............................................................................................................................................136
National Resources for Cardiovascular Dementia ............................................................................................137
National Resources for Lewy Body Dementia .................................................................................................137
National Resources about Sleep and Sleep Disorders .......................................................................................137
Understanding & Dealing With Alzheimer’s Disease & Related Disorders | V
Florida: General Resources for Older People ...................................................................................................137
Florida Driving Resources................................................................................................................................138
Glossary: understanding the language of care .................................................................139
11 Planning and Service Areas (PSAs) in Florida and Contact Information ...................................................140
Finding Care ....................................................................................................................................................141
Types of Care and Services ...............................................................................................................................141
Residential Facilities .........................................................................................................................................142
Paying For Care: Federal Funding ...................................................................................................................142
Paying For Care: State Funding .......................................................................................................................143
Insurance .........................................................................................................................................................143
Resources .........................................................................................................................................................143
VI | Florida Alzheimer’s Disease Initiative
Introduction nostic and clinical care, education, support, referrals,
community outreach, and research for families dealing
with Alzheimer’s disease and related disorders, though
more Floridians than ever need help.
Growing National Numbers
15 Alzheimer’s Disease Initiative (ADI)
The number of Americans with Alzheimer’s disease has
Memory Disorder Clinics
more than doubled since 1980. It is estimated that now
more than 5.4 million Americans have Alzheimer’s disease
The foundation of the Florida-wide Alzheimer’s Disease
or some other related severe memory disorder with 11 Initiative (ADI) integrated approach is the ADI network
million people providing unpaid care.1, 2 Even more fright- of 15 Memory Disorder Clinics. The 15 ADI Memory
ening are estimates that every 70 seconds in the United Disorder Clinics provide a continuum of services
States someone else is diagnosed with Alzheimer’s disease. throughout the entire state to meet the changing needs
And the numbers are predicted to reach as high as 16
of individuals with Alzheimer’s disease and their families/
million by 2050.1,2 caregivers through complete evaluations; treatment; edu-
cation of family and professional caregivers; research on
Some older people have mild difficulty remembering
brain function, the disease process, and possible cures;
details of an event or recalling names or misplacing items
and strategies to improve care and treatments over the
at home; they may or may not get worse over time. This
long term.
limited decline without difficulty doing one’s routine tasks
is known as Mild Cognitive Impairment, often called
Responding to the critical, ongoing educational need of
“MCI,” for short. MCI in some people may reflect the
families, professional caregivers, and others throughout
early stages of Alzheimer’s disease or a related disorder.
Florida to have ready access to updated information about
Current estimates indicate that about 8 million people in
Alzheimer’s disease and related disorders, care strategies,
the U.S. have MCI.3, 4
and helpful resources, a team from the 15 MDCs devel-
oped this second edition of the Alzheimer’s Disease Initia-
As the population ages, especially with the large numbers
tive Education Manual, available at the following link:
of baby boomers, more people will develop MCI, Al-
www.eldersaffairs.state.fl.us/doea/alz.php
zheimer’s disease, or related disorders with an increased
impact on society. The impact is especially strong on Purpose of the Alzheimer’s Disease Initiative
family caregivers and the many others who provide hands- Education Manual
on services to older people in their homes, residential care
facilities, or in community programs.5 The purpose of the Alzheimer’s Disease Initiative Education
Manual is to educate people about the basic health chang-
Florida’s Growing Numbers Dealing With es involved with Alzheimer’s disease and related disorders.
Alzheimer’s Disease and Related Disorders In addition, basic information discusses how the ability
to function changes during the course of disease. The
In Florida, more than 524,000 people have Alzheimer’s
information also suggests practical ways to provide care.
disease or a related memory disorder with about 640,000
Essentially this manual is psychoeducational in that it
caregivers providing a value of $8.4 billion in unpaid care.1
provides information to help people understand and deal
Those numbers are expected to grow as the number of
with disorders affecting brain function, in this case people
senior citizens grows and as they live longer.1,2
with Alzheimer’s disease and related disorders. This man-
ual is not an approved curriculum and does not meet the
Florida’s Leadership Addressing Challenges
statutory requirement for training of agency and facility staff
In 1985, the Florida Legislature launched the alzheimer’s members in nursing homes, assisted living facilities, home
disease initiative (ADI), an integrated system of demen- health agencies, adult day care centers, and hospice care fa-
tia-specific services to address current needs and prepare cilities who have regular contact with or provide direct care
for the increasing numbers of Florida residents with Al- to persons with Alzheimer’s disease or related disorders.
zheimer’s disease and related disorders. As a direct result
of that vision, today a solid, Florida-wide infrastructure Family members and other caregivers of people with
(under the Department of Elder Affairs) provides diag- Alzheimer’s disease face daily challenges to manage the
Understanding & Dealing With Alzheimer’s Disease & Related Disorders | 1
interactions and care of people with memory difficulties ing the decline of Alzheimer’s disease and related disorders
and other thinking problems. As the disease progresses, and learning strategies to manage the long-term care. In
memory, communication, thinking skills, planning, doing addition the care not only involves the primary family
tasks, and self-care get worse and caregivers must do more caregiver, other family members, and health providers,
while the care receiver does less. but also neighbors and others in the community. Through-
out the continuum of care, there are plans for future needs
As the disease continues, the abilities of the people with that the family must consider, difficult decisions to make,
the disease may be unpredictable, good one moment and and interaction skills and care strategies that must adapt
poor the next moment. They may remember what they to the ongoing decline of the person with Alzheimer’s
hear one day and the next day ask the same question over disease or a related disorder.
and over. A fact that is explained may make sense one
moment and no sense an hour later. Dressing may become Decisions such as long term care, relocation, or even the
difficult without help. Over time, abilities, such as the idea of role reversal may lead to family members feeling
ability to understand, to remember, to help with tasks, to guilty, angry, or depressed. Health care providers can
interact with others, and to provide self-care, become provide support, guidance, and comfort to reassure fam-
worse. ily members that their decision to use extra help is time-
ly and benefits all people involved. These decisions can
These health changes may be especially difficult for care- also impact health care providers and their personal at-
givers to handle. It may be especially taxing for caregivers titudes and feelings about caregiving, coworkers, and
who try their hardest to prevent decline, yet, over time, family dynamics. This text provides information for
the decline continues. families and health providers to use to educate themselves
and others. Objectives at the beginning of each chapter
The Florida Alzheimer’s Disease Initiative Education Man- can be transformed into questions for use after an educa-
ual provides simple information on many topics includ- tional session to check learning. To stimulate interactive
ing the following: audience participation, the educator or presenter should
add examples from the local community or create discus-
• The brain, sion exercises with open-ended questions, such as asking:
“How should we approach this situation?” or “What
• Ways to communicate to and understand peo-
would you do in the case?” Listings of references and
ple with progressive dementia,
resources offer ways to obtain additional information.
• Steps to solve behavioral problems and to or-
Acknowledgements and Appreciation
ganize tasks,
• Tips regarding personal care such as help with The Florida Alzheimer’s Disease Initiative Education Man-
bathing and dressing, ual was developed through the teamwork of the Florida
Department of Elder Affairs (DOEA), Alzheimer’s Disease
• Suggestions for activities,
Advisory Committee Members, and Memory Disorder
• A discussion of safety issues including driving Clinics. This material represents a major revision of the
issues, and earlier Alzheimer’s Disease Training Manual (1996) also
developed through the ADI Memory Disorder Clinic
• Ways to reduce caregiver stress.
team in partnership with many DOEA resource persons.
This manual also identifies some programs and resources
in Florida and on a national level that offer information, Special appreciation goes to colleagues who helped to
support services, and other help. write and/or edit the material:
Using This Information to Educate Others • Cheryl A. Luis, PhD (2008-09 Chair, AD Ad-
visory Committee);
Family caregivers, such as spouses and adult children, and
health care providers, such as doctors, nurses, social work- • Kathleen J. Houseweart, MBA, Coordinator,
ers, respite companions, and health aides, learn how to Sarasota Memorial Hospital Memory Disorder
provide information, support, guidance, and comfort to Clinic;
those in their care. In reality this care involves understand-
2 | Florida Alzheimer’s Disease Initiative
• Francine C. Parfitt, MSH, CCRC, Coordinator, References
Mayo Clinic Jacksonville Memory Disorder
1. Alzheimer’s Association. (2012). 2012 Alzheimer’s
Clinic;
Disease Facts and Figures. Alzheimer’s & Dementia, 8(2).
• Farah Sivolella, MSG, Executive Director, East
Central Florida Memory Disorder Clinic, Mel- 2. Hebert, L.E., Scherr, P.A., Bienias, J.L., Bennett, D.A.,
bourne; & Evans, D.A. (2003). Alzheimer Disease in the U.S.
Population: Prevalence Estimates Using the 2000 Census.
• Mary Denise Sparks, PhD, formerly the Direc-
Archives of Neurology, 60 (8), 1119 – 1122.
tor Florida Atlantic University Louis and Anne
Green Memory and Wellness Center, Memory
3. Daly, E., Zaitchik, D., Copeland, M., Schmahmann,
Disorder Clinic and currently at the University
J., Gunther, J. & Albert, M. (2000). Predicting conversion
of Arkansas Medical School, Geriatrics Institute;
to Alzheimer disease using standardized clinical informa-
• Martha Purdy, MSW, LCSW, Alzheimer’s Dis- tion. Archives of Neurology, 57(5), 675-680.
ease Initiative Brain Bank Program Supervisor,
ADI Advisory Committee Member; 4. Petersen, R.C. (2000). Mild cognitive impairment or
questionable dementia? Archives of Neurology, 57(4), 643-
• Carol W. Waters, PhD, Senior Management
644.
Analyst II, Florida Department of Elder Affairs;
and
5. Katzman, R. & Fox, P.J. (1999). The world-wide impact
• Margaret Lynn Duggar & Associates, Tallahas- of dementia: Projections of prevalence and costs. In May-
see, Florida. (Margaret Lynn Duggar oversaw eux, R. & Christen, Y. (Eds.). Epidemiology of Alzheimer’s
the publication of the first edition of this man- Disease: From Gene to Prevention, Heidelberg: Springer-
ual into user-friendly educational materials and Verlag, 1-17.
continues to pioneer efforts on behalf of older
people in Florida and beyond its borders.)
Finally, a special note of appreciation goes to the service,
education, outreach, and discovery efforts of the 15 Flor-
ida-wide Department of Elder Affairs, Alzheimer’s Disease
Initiative Memory Disorder Clinics/Centers and Brain
Bank listed after the references.
Thank you all,
Leilani Doty, PhD
Editor: Leilani Doty, PhD
Director of the University of Florida Cognitive and
Memory Disorder Clinics
Gainesville, Florida (2012)
Understanding & Dealing With Alzheimer’s Disease & Related Disorders | 3
Florida-wide Department of Elder Affairs, 14. Florida atlantic university louis and anne Green
Alzheimer’s Disease Initiative, 15 Memory Memory and Wellness center - Boca Raton, FL; Phone:
Disorder Clinics/Centers and Florida Brain 561-297-0502
Bank
15. Madonna Ptak center for Memory disorders at
Morton Plant Mease - Clearwater, FL; Phone: 727-461-
1. East central Florida Memory disorder clinic - Mel- 8244
bourne, FL; Phone: [phone]
16. StatE oF FloRida BRain BanK - Phone: 305-
2. lee Memory care - Lee Memorial Health System, 674-2018 or 305-674-2543 or 407-843-1910 ext. 308
Fort Myers, FL; Phone: [phone]
3. Mayo clinic – Memory disorder clinic - Jacksonville,
FL; Phone: [phone]
4. Memory disorder center at St. Mary’s -West Palm
Beach, FL; Phone: [phone]
5. north Broward Medical center Memory disorder
center - Deerfield Beach, FL; Phone: [phone]
6. orlando Health center for aging & Memory dis-
order clinic - Orlando, FL; Phone: [phone]
7. Sarasota Memorial Hospital Memory disorder
clinic - Sarasota, FL; Phone: [phone]
8. tallahassee Memorial Healthcare Memory disorder
clinic - Tallahassee, FL; Phone: [phone]
9. university of Florida Memory disorder clinic -
Gainesville, FL; Phone: [phone]; Clinic Appoint-
ments: 352-294-5000
10. university of Miami Memory disorders center -
Miami, FL; Phone: [phone]
11. university of South Florida Memory disorders
clinic - Tampa, FL; Phone: [phone]
12. West Florida Hospital Memory disorder clinic -
Pensacola, FL; Phone: [phone]
13. Wien center for alzheimer’s disease and Memory
disorders - Miami Beach, FL; Phone: [phone]
4 | Florida Alzheimer’s Disease Initiative