48p.and Alzheimer's Disease... What You Should Know. This booklet may be copied or otherwise...

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Developmental Disabilities and Alzheimer's Disease...WhatYou Should Know.Arc, Arlington, TX.Administration on Aging (DHHS), Washington, DC.1995-00-0048p.

90-AM-0679; R13AG/HD12353-01The Arc of the United States, 500 E. Border St., Suite 300,Arlington, TX 76010; telephone: 817-261-6003; fax:817-277-3491; TDD: 817-277-0553; e-mail: [email protected] Non-Classroom (055)MF01/PCO2 Plus Postage.Adult Day Care; Adults; *Alzheimers Disease; ClinicalDiagnosis; Coping; *Developmental Disabilities; Etiology;Financial Support; Legal Aid; *Long Term Care; Respite Care;Social Support Groups; *Symptoms (Individual Disorders)

This booklet provides an overview of Alzheimer's diseasealong with a description of the disease, how to find out if someone has it,and how it affects adults with developmental disabilities. It also providesinformation on what to do and suggests where to seek help. Specific sectionsdiscuss: (1) the etiology of the disease; (2) symptoms of Alzheimer'sdisease; (3) the general course of the disease; (4) other conditions thatproduce the same symptoms; (5) risk factors for Alzheimer's disease ordementia among people with developmental disabilities; (6) personal storiesof individuals with mental retardation and Alzheimer's disease; (7) Downsyndrome, aging, and Alzheimer's disease; (8) diagnosis of Alzheimer'sdisease; (9) places to go to be evaluated for the disease; (10) steps beyonddiagnosis; (11) other concerns, such as how to serve people with Alzheimer'sdisease with dignity, how to help adults with the disease to "age in place,"and how to prevent or defer changes in residence; and (12) resources forfamilies and caregivers, including home care services, adult day care,respite, hospice, financial or legal aid, and local support groups. A list ofresource organizations and a glossary of terms are also provided. (CR)

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U S DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

ED ATIONAL RESOURCES INFORMATIONCENTER (ERIC)

This document has been reproduced asreceived from the person or organizationoriginating itMinor changes have been made toimprove reproduction quality

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2 IA

Developmental Disabilitiesand Alzheimer's Disease...What You Should Know

This booklet may be copied or otherwise reproducedwith proper citation.

Developed by the Workgroup on Alzheimer's Diseaseand Developmental Disabilities and the New YorkCaregiver Assistance Project in Aging andDevelopmental Disabilities (New York State Office ofMental Retardation and Developmental Disabilities)and published by The Arc of the United States.

Support provided by grants #90-AM-0679 from theU.S. Administration on Aging and #R13AG/HD12353-01 from the U.S. National Institute onAging (Matthew P. Janicki, Ph.D., Project Director).

19953

DevelopmentalDisabilitiesand Alzheimer'sDisease...

A -it YouShouldKnow

tentsConcerns p. 2What is Alzheimer's disease? P. 3What are the symptoms of Alzheimer's disease? p. 4What is the general course of Alzheimer's

disease? p. 6Can other conditions produce the same

symptoms? p. 8Risk factors for Alzheimer's disease or dementia

among people with developmentaldisabilities p. 1(

Some personal stories p. 1'Down syndrome, aging and Alzheimer's disease p. 1F.

Is there a test for Alzheimer's disease? p.

Where does someone go to be evaluated forpossible Alzheimer's disease? p. 2]

What are the steps beyond diagnosis? p. 2';What are some other concerns? p. 2E

Where can families and caregivers of a personwith a developmental disability andAlzheimer's disease get help? p. 2f.

Where can you obtain assistance? P.Some terms p.

Some helpful resources p. 3c.

Some things to remember p. 4]

aD

Developmental Disabilities and Alzheimer's Disease Pg. 1

cerns

Are you caring for an older person with adevelopmental disability? Has this person shownmemory loss, confusion, loss of abilities at work,unexplained changes in personality and behavior, orunexpected decline in personal skills (such aswalking, bathing, toileting, dressing, or eating)? ItMAY be that some of these changes are associatedwith the onset of Alzheimer's disease. They may alsobe caused by some other age-associated conditionthat is treatable.

This booklet can help you, the caregiver or theagency person, who is concerned about Alzheimer'sdisease and developmental disabilities. It describesAlzheimer's disease, how to find out if someone hasit, and how it affects adults with developmentaldisabilities. It also provides information on what todo and suggests where to seek help.

What You Should Know Pg. 2

t is Alzheimer's disease?

Alzheimer's disease is a slowly progressive,degenerative disorder of the brain that eventuallyresults in abnormal brain function and death. Thedisease was first described in 1907 by a Germanphysician, Dr. Alois Alzheimer.

Alzheimer's disease is a disorder marked by agradual decline in brain function that gets worsewith time. It used to be assumed that this changewas a normal part of aging that we called "senility."Some persons develop this condition when they areas young as 40 years of age. However, the disease ismost common in persons over the age of 65. It isestimated that approximately 10 percent of personsover 65 years of age may have Alzheimer's diseaseand that in persons over the age of 85, up to 50percent may be affected.

Alzheimer's disease is not a normal part of the agingprocess. It is not "hardening of the arteries." It isnot contagious, and it is not known how it can beprevented. While the physical changes in the brain


are very similar among different people, thebehavioral and psychological symptoms that resultare complex and may differ from person to person.These symptoms lead to a form of "dementia" whichis the loss of mental skills and abilities, includingself-care capabilities. As Alzheimer's diseaseprogresses, these losses will result in totaldependency for even the simplest activities.

at are the symptoms ofAlzheimer's disease?

The early symptoms of Alzheimer's disease in thegeneral population often include:

Language problems. The person cannot find theright word or name for a familiar person, place orobject. This is not the same as taking longer torecall a word. It is far more than the "occasional"slip of a name that everyone experiences.

Loss of recent memory. The person may forget thathe or she just had breakfast or has left something

What You Should Know Pg 4

cooking on the stove, or may check and recheck thatthe bed has been made. However, recall of eventsfrom the distant past is often unaffected.

Loss of a sense of time and place. The person maybecome more and more confused about what day itis, or forget the route to well-known places.

Decline in activities of daily living. The person mayexhibit an unexplained loss of activities of daily living(ADL) skills. What once was an easy task for theperson may now be difficult.

Personality changes. These may be so slight that,at first, they are difficult to notice. Some peoplebecome more quiet and withdrawn. In other cases,they may become more and more restless. Somepersons may start to get angry over little things orhave sudden changes of mood for no apparentreason.


4at is the general course ofAlzheimer's disease?

First (or onset stage):The initial symptoms often appear very gradually.There may be some minimum memory loss,particularly of recent events. The individual mayexperience difficulty in finding the right words to useduring casual conversations. Work performancemay begin to deteriorate and changes in behaviormay start to become obvious. These changes maylast for a period of up to five years.

Second (or progressive stage):The symptoms noted during the onset stage nowbecome more obvious. There may be distinctproblems with language abilities--this is typically themost obvious sign of movement to this stage.Persons affected may have difficulty naming objectsor with maintaining a logical conversation. Theymay also have difficulty understanding directions orinstructions. They often become easily disorientedwith regard to what day it is (tiffle), where they are


(place), and who they are with (person). Confusionand the resulting frustration are often evident.Memory losses become even more pronounced. Theymay also begin to experience loss of self-care skills,including the ability to use the toilet (incontinence).Severe changes in personality may begin to becomeobvious, and their social behavior may be marked bysuspiciousness (paranoia) and delusions. Thesechanges may last for up to about twelve years.

Third (or terminal stage):Persons affected now experience substantialdysfunction. Basic skills such as eating or drinkingare forgotten. Because of eating problems, manypersons may experience a substantial loss of bodyweight (up to 20-30 percent). They may eventuallylose their ability to maintain balance and walk.Their ability to recognize other persons and theirenvironment is gone. Both long- and short-termmemories are lost. At this stage, persons affectedrequire complete 24-hour care and often becomebedridden and inactive. Because of this, they are atincreased risk for any infection, especiallypneumonia, and consequently are far more likely to

Development liabilities and Alzheimer's Disease Pg. 7

die. These changes, leading to death, may last forthree or more years.

<4n other conditions produce thesame symptoms?

Yes. There are numerous other disorders orconditions that result in symptoms similar to thoseof Alzheimer's disease. Many of these conditions aretreatable. It is therefore crucial to determine thecause of the symptoms and not assume they arealways due to Alzheimer's disease.

If a diagnosis of Alzheimer's disease is assumedwithout adequate evaluation, the adult with atreatable condition may be deprived of remedies thatcould help return him or her to normal function. Avariety of psychosocial and medical procedures mustbe used to rule out associated disorders as the causeof personality or behavior changes that otherwisecould be mistakenly attributed to Alzheimer'sdisease.

What You Should Know12 Pg. 8

It must not be assumed that someone hasAlzheimer's disease because he or she exhibits somesymptoms of the disease. Other common causes ofthese symptoms include: stroke, depression,medication reactions, thyroid disease, nutritionaldeficiencies, brain tumors, head trauma, subduralhematoma, and normal pressure hydrocephalus.

Although Alzheimer's disease is the most commoncause of dementia, it is only one of many causes.There are also "related disorders" that cause variousforms of dementia. These include multi-infarctdementia (a cortical dementia) and conditions likeHuntington's disease, Parkinson's disease, andCreutzfeldt-Jakob disease (which are sub-corticaldementias).

There are also "associated disorders," such asthyroid abnormalities, arthritis, hearing loss,temperature sensitivity and sleep pattern changes,that may occur at the same time as Alzheimer'sdisease but which are not caused by Alzheimer'sdisease. These conditions may be reversible ortreatable. They result in dementia-like symptoms

DevelopTenta is'abilities and Alzheimer's Disease Pg. 9

but do not actually cause the permanent brainchanges that result in dementia.

4sk factors for Alzheimer's disease ordementia among people withdevelopmental disabilities

"Developmental disabilities" describe mental andphysical disabilities that occur before age 22, impedenormal growth and development, and whichcontinue into old age. Mental retardation, cerebralpalsy, epilepsy, autism, and certain physical andneurological impairments are examples of variouscategories of developmental disabilities.

Most adults with a developmental disability are atthe same risk for Alzheimer's disease (or other formsof dementia) as are individuals in the generalpopulation. However, there are individuals with adev. elopmental disability who are at greater risk ofdeveloping the disease when the following arepresent:

What You Should Know I Pg. 10

If the individual is over 40 years of age and hasDown syndrome.

If the individual has had some form of head injury,especially severe or multiple injuries.

If the individual has a history of Alzheimer'sdisease in his or her family.

The presence of these factors does not necessarilymean that Alzheimer's disease (or some other form ofdementia) will occur. However, the presence of oneor more of these risks should alert the care providerto the increased probability of the person with adevelopmental disability developing this disease.When there is suspicion about the presence ofAlzheimer's disease, medical follow-up must be doneto ensure a proper differential diagnosis.

Studies at the New York State Institute for Basic

Research in Developmental Disabilities have shownthat the rate of occurrence of Alzheimer's diseaseamong persons with a developmental disabilityappears to be about 2 to 3 percent of adults age 40

Developmental labilities and Alzheimer's Disease Pg. 11

and older. People with Down syndrome make upabout 60 percent of the adults with mentalretardation who show signs of probable Alzheimer's

disease.

e personal stories

Stephanie L.

Over the last two years Stephanie L. has lost a greatdeal of her functioning ability. Stephanie L., who is54 years old and has Down syndrome, now hastrouble with feeding, toileting, dressing andcommunicating--things she could do quite well just awhile ago. The staff at the home where she lives aredoing a remarkable job in providing the hands-oncare that she now requires and have drawn upon avariety of community resources to help her. Theyhave also taken special training offered by the localAlzheimer's Association and have helped her getspecial supports from a local health adult dayprogram. Her case manager has spoken with severalprivate care agencies and is exploring the use of a

What You Should Know 1 6 Pg. 12

personal care aide. The personal care aide would beused to provide individualized attention to StephanieL. and offer some respite for the staff and otherindividuals living in her home. Other supportservices, like the local Alzheimer's support group andthe local hospice, are being used to help maintainStephanie L. in her home for as long as possible.

Francis G.

Not long ago, Francis G., who is 68, was employed ina sheltered workshop. As a young adult he wasdiagnosed with moderate mental retardation.Throughout most of his life he was productive,independent, and very aware of his personalappearance and how he conducted himself in public.He learned of a program at the community seniorcenter a couple of years ago, began attending twodays a week and then decided to participate daily.Not long after he became a regular participant, hisbehavior became erratic and he began losing a senseof time and place. He became incontinent, and hisappearance and personal care deteriorated. Histemperament became offensive. He would not agree

Developmentai and Alzheimer's Disease Pg. 134

to do most of the things he was asked to do. Hebecame forgetful, angry, and difficult around theother people at the center and the staff. Any changein schedule brought complaints. His abilities andsense of reality deteriorated rapidly. Eventually, he

could no longer attend the senior center, nor livewith his relatives, and was admitted to a localnursing home to meet his increasing physical needs.

Marion B.

A woman with Down syndrome, Marion B. was untilrecently very sociable, aware of herself, andarticulate in conversation. Her sense of humor,insight, and independent spirit rapidly vanishedwithin two years after she reached age 59. Thefamily with whom she lived and the staff at the dayprogram she attended noted ever-increasingconfusion and loss of self-care abilities. Her sleeppattern changed, and she began to stay awake allnight. She tried to eat waste, and began talking toher own image in the mirror, insisting it was "Susie,"an old friend. In a short time, she could no longerlive in the family home, which had been hers for ten

What You Should Know 18 Pg. 14A.

years, and had to move to a group home. Even thiswas not enough to meet her now intense need forpersonal care, and soon she was admitted to theAlzheimer's disease care wing of a communitynursing home.

4wn syndrome, aging andAlzheimer's disease

People with Down syndrome may experience healthproblems as they age that are different from thoseexperienced by older persons in the generalpopulation. The presence of extra genetic materialfound among persons with Down syndrome may leadto abnormalities in the immune system and a highersusceptibility to leukemia, seizures, cataracts,respiratory illness, and heart conditions. Personswith Down syndrome also experience prematureaging--that is, they show physical changes related toaging some 20 to 30 years ahead of persons of thesame age in the general population.

iDevelopmental Disabilities and Alzheimer's Disease Pg. 15

With increased age, persons with Down syndromemay experience "typical" hearing loss and visionchanges that are "expected to accompany beingolder," but will do so 20 to 30 years before otherpersons in the general population. Vision problemsmay be mostly due to cataracts. There may also beproblems with motor abilities and changes in theskin, nerve, muscle, digestive, and urinary systems.Compared to age peers, people with Down syndromehave higher rates of Alzheimer's disease. This maybe another example of age-related changes occurringearlier in persons with Down syndrome than wouldbe expected in persons in the general population.Adults with Down syndrome are often in their mid tolate 40s or early 50s when symptoms may firstappear, while symptoms first appear in persons inthe general population beginning in the late 60s.

Although about 20 to 40 percent of adults withDown syndrome show the behavioral symptoms ofdementia, upon autopsy nearly all older adults withDown syndrome show the brain changes associatedwith Alzheimer's dementia. The progression of thedisease takes, on the average,' about eight years--


somewhat less time than among persons in thegeneral population. Men and women seem to beequally susceptible.

The symptoms of the disease may be expresseddifferently among adults with Down syndrome. Forexample, at the early stage of the disease, memoryloss is not always noted, and not all symptomsordinarily associated with Alzheimer's disease willoccur. Generally, changes in activities of daily livingskills are noted, and there may be the onset ofseizures when there had been no seizures in thepast. Cognitive changes may also be present, butthey are often not readily apparent or they may beignored because of limitations in the individual'sgeneral functional level.

4there a test for Alzheimer's disease?

There is no single diagnostic test for Alzheimer'sdisease. If the presence of Alzheimer's disease issuspected, a complete physical examination andmore frequent medical, neurological, and

Developmental Disag?ities and Alzheimer's Disease Pg. 17

psychological evaluations are strongly recommendedto establish the progressive nature of the symptoms,particularly for adults with a developmental

disability.

A "definitive" diagnosis can only be made at the time

of autopsy. The numerous tests and evaluationprocedures will result in a "possible" or "probable"

diagnosis of Alzheimer's disease.

To make a probable diagnosis of Alzheimer's disease,it is necessary to observe a well-documentedprogression of symptoms and rule out any otherpossible conditions or disorders. To help securesuch a probable diagnosis, complete evaluationsmust be performed periodically. Such evaluations ortests are necessary to rule out conditions that arenot Alzheimer's disease, or are reversible forms of

dementia.

A complete evaluation should include:

A detailed medical history, provided by a familymember, caregiver or someone else well acquainted

What You Should Know 22 Pg. 18

with the individual. This is the best way todetermine accurately whether or not there has beenprogressive deterioration and personality changes,problems with memory, and difficulty with dailyactivities. As much as possible, the person shouldbe involved in this process and asked what he or shefeels is changing.

A thorough physical and neurologic examination,including the testing of sensory-motor systems, torule out other disorders.

A "mental status test" to evaluate orientation,attention, recent recall and the ability to calculate,read, write, name, copy drawing, repeat, understandand make judgments. Mental status evaluationsmay not be useful with individuals with preexistingcognitive limitations, such as severe mentalretardation. Because of this, mental statusexaminations need to take into account theindividual's past history and abilities and shouldnever be the sole clinical assessment.

23

Developmental Dighbitities and Alzheimer's Disease Pg. 19

A psychiatric assessment to rule out the presenceof a psychiatric disorder, particularly depression.

Neuropsychological testing to measure a variety offunctions that include memory, orientation,language skills, intellectual abilities, and perception.

Routine laboratory tests, including blood work,health exams, such as urinalysis, chest x-ray, elec-troencephalography (EEG), and electrocardiography(EKG), as well as certain specialized tests as deemedappropriate. Imaging techniques, such as CT(computerized axial tomography) and MRI (magneticresonance imaging), can be useful in showingprogressive brain atrophy and helping to rule outother selected dementias. However, these techniquesare costly and are mostly used in research.

Although the above assessments apply to mostpeople with a developmental disability who may besuspected of having Alzheimer's disease, the sole useof mental status and psychiatric assessments isinappropriate, especially for persons with severemental retardation. It is recommended that, at


minimum, annual or more frequent evaluations andmeasures be used to look for changes in existingskills.

ere does someone go to beevaluated for possibleAlzheimer's disease?

A good place to start is with the person's physician.A neurologist, geriatrician, or an internist can alsobe a valuable resource.

States may have specialized centers for theevaluation and treatment of people with Alzheimer'sdisease. These centers may provide geriatricevaluations and assessment procedures plus otherservices. States may also have specialized servicesfor people with developmental disabilities who areaging. These may include special clinics of localmental retardation, mental health or aging agencies,and university affiliated programs in developmentaldisabilities.

25(1

Developmental btgabilities and Alzheimer's Disease Pg. 21

To find Alzheimer's disease services in your area,contact the city or county health department, localmental health/mental retardation centers, hospitals,area agency on aging or the information and referral

service that many cities provide through the UnitedWay or other organizations. You may also be able tolocate these services by looking in the telephonebook under "Health" or "Social" Services. Thesesame resources may also be able to refer you to anystate or community programs or clinics whichspecialize in services to older people with

developmental disabilities.

are the steps beyond diagnosis?

Once the suspicion of Alzheimer's disease has beenclinically confirmed, the person's family, caregiver, orpaid providers may need to make changes in theperson's daily routine.

First and foremost, the person must feel safe andsecure in his or her environment. As a result of thecomplications associatedth Alzheimer's disease,


what may have been comfortable and familiar for theindividual will become unrecognizable and result inunpredictable behavior. For example, some personsmay have changes in behavior that make them seemsuspicious and delusional.

To help with the changes in behavior,consider the following:

Emphasize maintaining abilities, particularly thoseaffecting dignity (e.g., toileting, eating), rather thantrying to teach new skills.

Keep changes in environment and daily routine toan absolute minimum.

Simplify routines and reduce choices to minimizefeelings of anxiety and frustration.

Use patience and redirection, keep verbal requestssimple, and provide general supportive care.

Maintain self-awareness by using reminiscing andtalking about past experiences, when appropriate.

Developmental Rise ilities and Alzheimer's Disease Pg. 23d

Help the person maintain his or her orientation bynaming events for the day, reminding him or her of

the day, time and place, and repeating the names of

others around him or her. Try not to "force" him orher back to your reality, but also don't allow a moveinto a delusion that you may be inadvertentlyreinforcing.

Reassure the person daily, even when there is no

response.

Try to understand the words and symbols theperson is using in communicating. Be patient, anddon't try to force the person to understand yourmeans of communicating; adapt to his or hers.

Provide appropriate foods and liquids to maintain

nutrition and hydration.

Respond to suspicions and delusions withreassurance.

28What You Should Know Pg. 24

Consult a physician about stopping nonessentialmedications and, when appropriate, assumeresponsibility for giving the person his or her neededmedications.

Minimize toileting accidents by establishing atoileting routine.

Convey affection and protection by a quiet voiceand use touch for reassurance and praise.

To help with changes in program practices,consider the following:

Provide a familiar and safe environment, andprovide closer supervision to minimize confusionand disorientation.

Maintain present level of independence byincreasing staff supervision, prompts, and hands-oncare.

Modify the individual's program or support plan toanticipate changing activities of daily living (ADLs)and supervision needs. 2S


Monitor and document increased episodes ofconfusion, disorientation, or memory lapses tobecome more prepared as they repeat in the future.Continue assessments for mobility, safety, and ADL

needs.

Inform staff, family members, and caregivers closeto the person of changes and strategies in the plan

of care.

Seek to identify "triggers" that result in inappro-priate or dangerous behavior and try to minimize the

likelihood that they will occur in the future.

4:tat are some other concerns?

Other concerns may include how to help staff adaptprograms and services to changes that result from

Alzheimer's disease, especially how to serve that

person with dignity, how to help adults with possible

Alzheimer's disease "age in place," and how to

prevent or defer changes in residence.

30


In some programs, particularly those governed bystate regulations requiring active treatment, staffmay need to emphasize a different approach to care.The program plan should be adapted to reflect thebehavioral and physical changes the persons mayexperience that result from the various stages of thedisease. Program philosophies that emphasizechoice-making may need to be reevaluated, becausemaking choices can be very confusing andfrustrating for someone with Alzheimer's disease.

As the disease progresses, staff need to be preparedto adapt treatment practices to the changing needsof the individual with probable Alzheimer's disease.These adaptations should reflect a knowledge of thecourse of Alzheimer's disease and the potential fordiminishing abilities among self-care,communication, and orientation skills. A balanceshould be maintained between compensating for lossof skills and maintaining development.

Early signs and symptoms of Alzheimer's disease donot necessarily warrant changes of a program orresidence, particularly if the older adult is already

1.Developmental Disabilities and Alzheimer's Disease Pg. 27

used to attending or living in a familiar place. Theadult should be allowed to "age in place" with dignityand respect. Many adaptations can be made to theperson's program or home environment to make itsafe and practical. Modifications in activities andsupervision may be necessary.

Many caregivers will continue to provide care nomatter how difficult it is. However, with theadvanced progression of the disease, particularlywhen there is total loss of self-care skills and mentalabilities, some caregivers or staff may be faced withthe difficult decision of whether or not to acceptadmission to a facility that can provide appropriatelong-term care.

The need to change residence can be reduced byproviding supports greater than those already beingprovided to the individual. Providing such supportsshould always be considered prior to a change inthe person's residence. Those at jeopardy of havingto change residence as the disease progressesinclude persons who are living:

(k,What You Should Know Pg. 28

With a caregiver who may be unable to continuesupervision and supports on his or her own, unlesshe or she receives additional assistance.

Alone or with a spouse or friend and who may be atrisk for personal injury due to memory loss,disorientation, and personal skill deterioration.

In a residence where the person's needs havesubstantially changed due to an increased need forsupervision and nursing care, the individual'sbehavior has a marked negative effect upon others inthe residence, or the individual's overall deterioratingcondition transcends the level of care which can beprovided in the residence.

*ere can families and caregivers of aperson with a developmentaldisability and Alzheimer's diseaseget help?

As a family member, you may need to plan for futurecare in a residential setting that is equipped to


provide for a person with a developmental disabilitywho has Alzheimer's disease. However, until thattime, many things can be done to provide in-home

supports.

Many family members and caregivers of an adultwith a developmental disability have provided alifetime of affection, support, and care whilewatching the individual progress and become moreindependent. It is particularly difficult for a familymember or caregiver to watch his or her relative loseskills associated with the onset of Alzheimer'sdisease. Therefore, it is very important to obtainservices and supports during this difficult time.

Certain specific services may be helpful insupporting the care that you are providing:

Home care services These include having ahomemaker assist in the home or having a nursingaide provide personal care to the adult. It may alsoinclude home-delivered meals, friendly visiting, andthe services of a senior companion. For the namesof agencies that provide home care services in your


community, call your local area agency on aging orlook in the yellow pages of your telephone directory(generally under "Home Health Services").

Adult day care Available in many communities,this program may offer a brief respite from caregivingand an opportunity for the adult to become involvedin different day activities. For names and locationsof adult day care programs in your community, callyour local area agency on aging, your county healthdepartment, the local chapter of The Arc or otherdisability agency, or look in the yellow pages of yourtelephone directory (generally under "Day CareCenters-Adult" or "Elderly Person Services").

Overnight or weekend respite Either in the homeor at another setting, respite offers a chance for thecaregiver to take a vacation or other short breakfrom caregiving. For names of agencies that providerespite services in your community, call your areaagency on aging, the local or state mentalretardation agency, local chapter of The Arc or otherdisability agency, or look in the yellow pages of your

35Developmental Disabilities and Alzheimer's Disease Pg. 31

telephone directory (generally under "Social andHuman Services").

Hospice This includes special support services inthe home or within a specialized hospice settingduring the last six months of life. Hospice servicesare for persons who are terminally ill as well as fortheir caregivers. For the name of the hospice in yourcommunity, contact your local health department orlook in the yellow pages of your telephone directory(generally under "Hospices").

Financial or legal aid This includes aid inarranging for payment for care and help in settlinglegal concerns, such as wills and trusts. Forinformation on how to obtain such aid, consult yourlocal area agency on aging, local chapter of The Arc,or other local disability agency.

Local support groups These include counseling orother group supports with persons in a similarsituation. For information on how to obtain suchaid, consult your local Alzheimer's Association orlocal area agency on aging.


Some area agencies on aging or local senior servicesagencies maintain special caregiver assistanceprograms. Some of these include special supportsfor parents with a son or daughter with adevelopmental disability. These programs can helpyou obtain specialized in-home services and othersupports. To receive more information regarding anyof these services, call your local area agency on agingor local chapter of The Arc.

If you are a staff member providing residential or dayservices for an individual with a developmentaldisability whom you suspect may be showingsymptoms of Alzheimer's disease, you can turn toyour agency for guidance and assistance. You canalso call your local area agency on aging, local officeof your state mental retardation and developmentaldisabilities agency, local chapter of The Arc, localAlzheimer's Association, or any local Alzheimer'sdisease or dementia assistance program or servicefor advice.

If you are providing care to an individual withAlzheimer's disease, you may want to participate in a

Deuelopmentat-DiSabitities and Alzheimer's Disease Pg. 33

support or educational group. These groups are forpeople in similar caregiving situations who meetregularly to share experiences and advice with eachother and learn about resources available to them.

To find out about support and educational groupsand related resources in your area, call your localarea agency on aging, mental retardation stateagency, local chapter of The Arc or other disabilityagency, local Alzheimer's Association, or look in theyellow pages of your telephone directory (generallyunder "Social and Human Services") or in the whitepages business listings.

re can you obtain assistance?

Caring for someone with a developmental disabilitywho may have Alzheimer's disease can be a long anddifficult task. There are many helpful resources thatcan assist families and other caregivers of peoplewith Alzheimer's disease. If you need help or justwant to learn more about Alzheimer's disease,contact:

What You Should Know 3S Pg. 34

(1'.3

The Alzheimer's Association. This is the onlynational voluntary organization dedicated toconquering Alzheimer's disease through researchand by providing education and support to peoplewith Alzheimer's disease, their families andcaregivers. The Alzheimer's Association has localchapters throughout the United States, plusproduces a wide-range of materials on this disease.To locate the nearest local chapter, or to get moreinformation or receive materials, contact theassociation at 1-800-272-3900. You can also writethe Alzheimer's Association at 919 North MichiganAve., Suite 1000, Chicago, Illinois 60611-1672.

Your area agency on aging. In some communities,this agency may be called by a different name, suchas office or department for senior citizen affairs orsenior services. Look for the telephone number inyour local telephone directory. Most area agencieson aging also issue a community resource directorywhich lists many Alzheimer's disease assistanceresources.

Developmental Disabiliqesjand Alzheimer's Disease Pg. 35

Your state office or agency on aging. These are alsocalled state units on aging (SUAs). Contact your SUAand explain your situation and ask for suggestions.Don't forget to ask for the number of your area agencyon aging. To contact your state aging agency look in thestate government listings of your local telephonedirectory.

The Alzheimer's Disease Education and ReferralCenter (ADEAR). Operated by the National Institute onAging, the ADEAR can provide some helpful informationthrough its variety of publications. You can write theCenter at P.O. Box 8250, Silver Spring, MD 20907-8250or call 1-800-438-4380.

The Arc (formerly the Association for Retarded Citizens of

the U.S.) is the country's largest voluntary organization

committed to the welfare of all children and adults with

mental retardation and their families. The Arc haschapters throughout the United States and providespublications and other useful information. You can writeThe Arc at 500 E. Border St., S-300, Arlington, TX 76010

or call 1-800-433-5255, TDD 1-800-855-1155 and askoperator to call collect (817) 277-0553.


*lie terms . . .

activities of daily living(ADL) routine activitiesengaged in during thecourse of the day, such aswashing, grooming,dressing, eating andcooking.associated disordersconditions that are presentat the same time.Alzheimer's disease aprogressive neurodegenera-tive disease characterizedby loss of function anddeath of nerve cells inseveral areas of the brain,leading to loss of cognitivefunction such as memoryand language.autopsy for Alzheimer'sdisease gross andmicroscopic examinationsof brain tissue after deathto confirm the clinicaldiagnosis.cataracts a clouding ofthe lens of the eye whichblurs vision.cognitive changeschanges in thinkingabilities (such asreasoning).cortical dementiadementia associated withimpairment of that part ofthe brain that affects

41

memory, attention,reasoning, and abstractthinking.Creutzfeldt-Jakob disease

a neurological disease,lasting about three years,that leads to rapid loss ofmemory, speech andwriting skills, reasoningabilities, and a majority ofbodily functions prior todeath.definite Alzheimer'sdisease a level ofdiagnosis that is supportedby evidence of neurologicalchanges present atautopsy.delusions beliefsmaintained even when theyare contrary to truth.dementia widespread lossof mental skills andabilities of such severitythat capability to care foroneself is lost.developmental disabilityany mental or physicalfunctional impairment thatoccurs before age 22,impedes normal growth anddevelopment, and whichcontinues into old age.differential diagnosisclinical evaluation ofpossible causes of dementiato rule out all other factorsbefore settling onAlzheimer's disease.

Developmental Mabilities and Alzheimer's Disease Pg. 37

Down syndrome achromosomal abnormalityof chromosome 21associated with mentalretardation.functional capabilitieswhat a person is able to do.head injury an impact tothe head which causesinjury to the brain andresults in long term damageand impairment.hospice a philosophy ofcare that focuses on reliefof symptoms, pain control,and providing a variety ofsupports through theperiod of dying.Huntington's disease agenetically linkedneurological disease thatleads to loss of movementin the face, arms and legs,loss of speech and use ofthe brain and leadseventually to dementia.incontinence inability tocontrol bowel and bladderfunctions.leukemia a fatal diseaseof the white blood cells andblood-forming organs.multi-infarct dementiadementia due to loss ofblood supply in the brainafter a series of smallstrokes.

What You Should Know

hydrocephalusenlargement of the headdue to the accumulation offluid around the brain.paranoia behaviorcharacterized by extremesuspiciousness anddelusions.Parkinson's disease aneurological disease thatleads to tremors, musclerigidity, and slowing of allbody motions.possible Alzheimer'sdisease a level ofdiagnosis that is supported,but with a degree ofuncertainty, by the person'smedical history, and byneurologic, psychiatric, andclinical examinations, neu-ropsychological tests, andlaboratory studies.premature aging physicalchanges related to agingoccurring ahead of whatwould be normally expectedfor a person's chronologicalage.probable Alzheimer'sdisease a level ofdiagnosis that is supportedwith relative certainty bythe progressivedeterioration of specificcognitive functions, motorskills, and perception,impaired activities of daily

Pg. 38

living and altered patternsof behavior, family historyof similar problems, andlaboratory findings ofphysical changes.related disordersconditions that are similarin nature to the maincondition but occur for adifferent reason.sensory-motor thoseaspects of movement andsensation.subcortical dementiadementia associated withimpairment of the lowerpart of the brain thataffects speed of motor andmental processes.subdural hematoma ahemorrhage under the duraor membrane covering thebrain and spinal cord.

4tne helpfulresources . . .

Caring for Alzheimer'sPatients: CaregiversPractical Help. New YorkState Office for the Aging, 2Empire State Plaza, Albany,NY 12223

el

Alzheimer's Disease andDown Syndrome (FastFacts on Aging #1). TheUniversity of Missouri-Kansas City Institute forHuman Development, 2220Holmes Street, 3rd Floor,Kansas City, MO64108-2676Alzheimer's Disease: AFamily Survival Guide.Alzheimer's DiseaseResearch, 15825 ShadyGrove Road, Suite 140,Rockville, MD 20850Alzheimer's Disease: AFamily InformationHandbook. Health andWelfare Canada, c/oAlzheimer Society ofCanada, 185 Bloor StreetEast, Suite 222, Toronto,Ontario M4W 3J3 Canada,(416) 927-1580Alzheimer's Disease ASpecial Report. HarvardMedical School, HealthPublications Group,Department ALZ, P.O. Box380, Boston, MA 02117A Path for Caregivers.American Association ofRetired Persons, 601 EStreet, N.W., Washington,DC 20049

43Developmental Disabilities and Alzheimer's Disease Pg. 39

Caring for theAlzheimer's Patient atHome: Tips for Coping.Alzheimer's DiseaseResearch, 15825 ShadyGrove Road, Suite 140,Rockville, MD 20850

The 36-Hour Day: AFamily Guide to Caringfor Persons withAlzheimer's Disease,Related DementingIllnesses and MemoryLoss in Later Life. JohnsHopkins University Press,Baltimore, MD 21218Practice Guidelines forthe Clinical Assessmentand Care Management ofAlzheimer Disease andOther Dementia AmongAdults with MentalRetardation. AmericanAssociation on MentalRetardation, 444 NorthCapitol Street, N.W., Suite846, Washington, DC20001-1570

What You Should Know

Down's syndrome andAlzheimer's disease.(1994) Down's SyndromeAssociation, 155 MitchamRoad, London SW17 9PG,England

Q&A: Alzheimer's diseaseand people with mentalretardation. (1995) TheArc, 500 E. Border St.,Suite 300, Arlington, TX76010

44

Pg. 40

4te things to remember.. .Alzheimer's disease is a slowly progressive

degenerative disease that eventually results in death.It is not part of normal aging.

Symptoms of Alzheimer's disease include losses inlanguage, recent memory, orientation, activities ofdaily living, and changes in personality.

Many conditions that are treatable producesymptoms that are similar to Alzheimer's disease. Itis important for adults showing signs of dementia(loss of mental disabilities) to have a completemedical workup.

Persons with a developmental disability are atgreater risk for Alzheimer's disease if they are olderthan 40 and have Down syndrome or come from afamily with a history of Alzheimer's disease.

Persons with Down syndrome appear to age morerapidly than other persons in the general populationand thus are at greater risk for Alzheimer's disease

't 45Developmental Disabilities and Alzheimer's Disease Pg. 41

than are peers of similar age. Although only some20 to 40 percent of adults over age 45 show thebehavioral signs associated with symptoms ofAlzheimer's disease, nearly all show the brainchanges associated with Alzheimer's disease at

death.

A complete evaluation and several periodic reviewsof behavioral changes are necessary to develop adiagnosis of Alzheimer's disease. These shouldinclude, at minimum, a comprehensive history,physical, neurologic and neuropsychiatricassessments, and a mental status exam.

Persons who have Alzheimer's disease may behelped by care management programs. These helpto maintain the person's highest level of functioning.

To minimize confusion and agitation caused bydementia, changes in the residence and otherfamiliar activities should be avoided.


Staff, family and care providers should adapt theplan of care to reflect the person's diminishingabilities and focus on the person's remainingstrengths.

Many services are available to support the carethat staff and family provide to an individual withAlzheimer's disease, including home care, adult daycare, overnight and weekend respite, hospice,financial and legal aid, and family support groups.

a nationalT h e organizationArcon mental

retardation

For copies of this book contact:

The Arc of the United States

National Headquarters500 East Border Street, Suite 300Arlington, TX 76010(817) 261-6003(817) 277-0553 TDD(817) 277-3491 FAX 4 [email protected] e-mail


Published by:

The Arc of the United States500 E. Border, Suite 300Arlington, Texas 76010

(817) 261-6003 (817) 277-3491 FAX(817) 277-0553 [email protected] e-mail

T h eArc a national organizationon mental retardation

Er

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