living with alzheimers

7/28/2019 Living With Alzheimers

1/56

Living with

Alzheimers

Alzheimers Disease Research


2/56

BrightFocus Foundation is the new name or the nonprot American HealthAssistance Foundation, celebrating 40 years o support or health research

and public education. The new BrightFocus name refects our continued

commitment to advancing knowledge that saves mind and sight. Our three

programsAlzheimers Disease Research, Macular Degeneration Research, and

National Glaucoma Researchocus on the toughest challenges acing brain

and eye health.


3/56

Table o Contents

Introduction..................................................................................... 1

Alzheimers DiseaseDescription, Risk Factors,

and Mitigating Risk .........................................................................3

Description ...................................................................................3

Known Risk Factors ....................................................................5

Potential Contributing Factors .................................................6

Mitigating Risk through a Healthy Liestyle ...........................7

Alzheimers DiseaseDiagnosis, Stages,

Treatment, and Research ..........................................................9Diagnosing Alzheimers Disease ..............................................9

Types o Specialists ................................................................... 11

Stages o Alzheimers Disease ................................................12

Current Medical Treatments or the

Symptoms o Alzheimers Disease ........................................14

Research on Potential Treatments or

Alzheimers Disease ..................................................................16

Emotional Impact o Diagnosis .................................................17Eect on Those with Alzheimers Disease...........................18

Eect on Family Member ........................................................19

Living with

Alzheimers


4/56

Planning or the Future ...............................................................21

Employment ..............................................................................22

Gathering Important Inormation..........................................23

Division o Responsibilities .....................................................25Home Saety ............................................................................. 26

Driving Saety ............................................................................ 28

Financial Matters ...................................................................... 29

Legal Matters .............................................................................31

Advance Medical Directives ....................................................33

Finance-related Documents ................................................. 34

Caregiving ......................................................................................35

For Those Who Live Alone ......................................................35Staying Active ............................................................................37

Getting involved in a support group... ................................. 38

Role o the Caregiver.................................................................. 39

Caregiver Stress ............................................................................41

Support Groups ........................................................................... 42

Caregiving Options or the Future ........................................... 43

Short-term and Temporary Care .......................................... 44

Long-term Care ....................................................................... 45

Hospice Care .............................................................................47Choosing a Nursing Home ....................................................48

Some Final Words ....................................................................... 49


5/56BrightFocus Foundation 1

IntroductionEach year, the number of people with Alzheimers

disease increases.

Currently, an estimated 5.4

million Americans are living with

this degenerative brain disorder.

Worldwide, nearly 36 million

people are believed to be living

with Alzheimers disease or other

dementias. Already, nearly one in

two people (43 percent) age 85 and

older in the U.S. have Alzheimers, and

this age group is among the astest-

growing segments o the population.

By the year 2050, more than 15

million Americans could be living with

Alzheimers, and 115.4 million people

worldwide are expected to have

Alzheimers or other dementias.

In the past, there were many

misconceptions about Alzheimers

disease. The symptoms were thought

to be an inevitable and usual part o

growing old. Although mild memory

delays and orgetulness are oten

associated with the elderly, these

should not be conused with the

progressive deterioration associated

with Alzheimers disease, which

involves a range o symptoms that

go beyond mere memory lapses. We

now understand that Alzheimers is a

specic disease primarily connected

with aging.

In 1906, the German physician Alois

Alzheimer rst identied, through

an autopsy o one o his patients, acollection o plaques surrounding the

brains nerve cells and tangled bers

within the cells. The disease aecting

these brain cells would eventually bear

his name.


6/562 Living with Alzheimers

Since this discovery, there have been

many scientic breakthroughs in

Alzheimers disease research. In the

1960s, scientists discovered a link

between cognitive decline and the

number o plaques and tangles in

the brain. The medical community

then ormally recognized Alzheimers

as a disease and not a normal part

o aging. In the 1970s, scientists

made great strides in understanding

the human body as a whole, andAlzheimers emerged as a signicant

area o research interest. This increased

attention led, in the 1990s, to important

discoveries and a better understanding

o complex nerve cells in the brains

o Alzheimers patients. More

research was done on Alzheimers

susceptibility genes, and several drugswere approved to treat the cognitive

symptoms o the disease.

Over the last decade, scientists

have made substantial progress in

understanding potential environmental,

genetic, and other risk actors or

Alzheimers disease, and the processesleading to ormation o plaques and

tangles in the brain. Specic genes

related to both the early-onset and

late-onset orms o Alzheimers

have been identied, and more

eective treatment options have

been approved by the U.S. Food and

Drug Administration (FDA). However,

Alzheimers disease is still incurable.

The drugs currently in use treat only

the symptoms, not the cause, o the

disorder, and they only temporarily

slow the progression o cognitive

decline.

As our understanding and knowledge

o Alzheimers disease grows, scientistsare homing in on the possible root

causes o the disease. More eective

drugs with ewer side eects are

likely to emerge over the next several

years. These drugs may not prevent

or reverse the disease, but could act

to substantially slow its progress.

Furthermore, through increasedinvestment in research, the road to a

breakthrough discovery leading to a

cure may be shortened.

BrightFocus oers a ree resource

list containing inormation on several

organizations that can help deal

with aspects o Alzheimers disease,including caregiving, long-term care

acilities, nancial and legal issues,

and clinical trials. See the end o this

booklet or more inormation.


7/56



to their eventual death. Scientists

are not entirely sure whether these

plaques and tangles are a cause

o Alzheimers or are caused by it.

However, much research is ocused

on stopping the accumulation o

these proteins or preventing them

rom turning toxic.

Brain images o those with Alzheimers

disease show degeneration in regions

vital to memory ormation, which

explains why Alzheimers patients

have trouble learning new acts and

retaining short-term memories. Later

in the disease, these images also

reveal degeneration o the rontal

lobe, which acts as the executive o

the brain. Alzheimers disease aects

a persons cognitionthe process

o knowingincluding awareness,

perception, reasoning, and judgment,

as well as personality, behavior, and

communication. As the rontal lobe

deteriorates, the individual exhibits

symptoms such as poor organization

and planning, distractibility, irritability,

and apathy.

Many people in the eld use stages

in its evolution (see page 12)when

discussing the many issues related to

Alzheimers disease. As the disease

advances, the patients abilities

decline.



onset orm o Alzheimers disease.

There are three orms o this

gene: ApoE2, ApoE3, and ApoE4.

Roughly one in our Americans

has ApoE4 and one in twenty has

ApoE2. While inheritance o ApoE4

increases the risk o developing

Alzheimers, ApoE2 substantially

protects against the disease. Some

current research is ocused on the

association between these two

orms o ApoE and Alzheimers.

Familial Alzheimers disease (FAD),

or early-onset Alzheimers, is an

inherited, rare orm o the disease,

aecting ewer than 5 percent o

Alzheimers patients. FAD develops

beore age 65 and can strike

people as young as 30. It is caused

by mutations o one o three genes

on chromosomes 1, 14, and 21.

Known Risk Factors

Scientists have identied actors

that appear to play a role in the

development o Alzheimers, but have

not yet reached any rm conclusions

as to the exact causes o this complex

disease. There are likely many

contributing actors, rather than a

single cause. These include:

Age: The single greatest risk odeveloping Alzheimers disease

is age. Approximately six percent

o Americans between the ages

o 65 and 74 are thought to have

Alzheimers disease; or those age

85 and older, the estimates range

rom 35 percent to nearly hal.

Genetics: The majority oAlzheimers cases are late-onset,

usually developing ater age 65.

Late-onset Alzheimers disease

has no known cause and shows

no obvious inheritance pattern. In

some amilies, however, clusters

o cases are seen. A gene called

Apolipoprotein E(ApoE) appears

to be a risk actor or the late-



Potential Contributing Factors

that sometimes result rom

chemical reactions within cells.

These molecules seek stability by

attacking other molecules, which

can harm cells and tissue and may

contribute to the neuronal brain

cell damage caused by Alzheimers

disease.

Inammation: Inammation isa natural but sometimes harmul

healing unction in which immune

cells rid tissues o dead cells and

other waste products. As protein

plaques develop in Alzheimers

disease, inammation results. It is

not known whether this process

is damaging and a cause o

Alzheimers or part o an immune

response attempting to contain the

disease.

Other possible risk actors:Some studies have implicated

prior traumatic head injury, lower

education level, stress, and emale

gender as possible risk actors.

Alzheimers disease may also be

associated with an immune system

reaction or a virus.

Cardiovascular disease: Riskactors associated with heart

disease and stroke, such as

high blood pressure and high

cholesterol, may also increase

the risk o developing Alzheimers

disease. High blood pressure

may damage blood vessels in

the brain, disrupting regions

that are important in decision-

making, memory, and verbal skills,

which could contribute to the

progression o Alzheimers. High

cholesterol may inhibit the ability

o the blood to clear protein rom

the brain.

Type 2 diabetes: There isgrowing evidence o a link

between Alzheimers disease and

type 2 diabetes. In Type 2 diabetes

insulin does not work eectively

to convert blood sugar into

energy. This inefciency results

in production o higher levels o

insulin and blood sugar, which

may harm the brain and contribute

to the progression o Alzheimers.

Oxidative damage: Freeradicals are unstable molecules



Mitigating Risk Through a Healthy Liestyle

While the known risk actors or

Alzheimers diseaseaging and

geneticsare not controllable,

numerous studies indicate that a

healthy liestyle may lower the risk o

developing Alzheimers. Its important

to keep the body and mind in good

shape through good nutrition,

sufcient exercise, avoidance o

smoking, controlling certain physical

conditions, and engaging in mental

and social activities.

Diet: It is recommended thatone eat a varied diet that includes

plenty o ruits and vegetables;

legumes (or example, beans, peas,

and seeds); ruits; whole grain and

sh; and is low in saturated at and

added sugar. Foods that contain

omega-3 atty acidssuch as tuna

and salmon; certain oils, nuts, and

seeds; and the antioxidant vitamins

A, C, and Emay also be benecial.

Exercise: Physical activityreduces the risk o many diseases,

helps maintain a healthy weight,

and enhances mental tness. A

combination o moderately intense

aerobic exercise, strength training,

and activity that increases exibility

is recommended.

Physical conditions: Researchhas shown that vascular disease,

stroke, high blood pressure, high

cholesterol, and diabetes may all

be associated with an increased

risk o developing or worsening

Alzheimers. Control these

conditions i they are

already present,

and avoid them,

i they have

not developed,

through diet

and exercise.



Depression and stress can lead to

physical problems and have also

been linked to Alzheimers, so they

should be treated i necessary.

Social connections: Healthbenets arise rom maintaining

and increasing social connections

with amily and riends through

creative and intellectual pursuits,

such as crats and hobbies; playing

cards and games; attending

plays, musical perormances and

lectures; and visiting parks and

museums.

Currently, there is no known treatment that will cure

Alzheimers disease. However, there are medications that can

help control its symptoms.

Mental activity: It is possibleto build up brain reserves by

continuing to enjoy avorite

pastimes and engaging in new

and challenging activities such

as playing board, card, and video

games; solving puzzles; reading,

writing, and corresponding; and

even conversing and singing.

Taking a class, learning to play a

musical instrument, or taking up

a new hobby all benet health

and mood. Choosing enjoyable

activities makes it easy to stick to a

plan or good health.



Diagnosing Alzheimers Disease

Alzheimers Disease

Diagnosis, Stages, Treatment,and Research

treatable conditions. In addition, some

dementias are caused by dehydration,

drug reactions, hypothyroidism,

inection, or other physical problems.

These dementias can be reversed.

A physician, through a complete

examination, can rule out other

conditions with similar, Alzheimers-

like symptoms. Although a true

Many people recently diagnosed with

Alzheimers may have elt or some

time that something isnt right. They

may have become more orgetul,

ound themselves easily disoriented,had unexpected lapses in judgment,

or experienced unusual mood swings

and emotions. These can be early

signs o dementia, but they can

also be signs o depression or other



diagnosis can only be made by doing a

brain autopsy, physicians can correctly

diagnose Alzheimers disease in nine

out o 10 cases through examination

and testing. Early diagnosis and

treatment are important, because

current drugs appear to be most

eective at slowing cognitive decline

when taken in the rst stages o the

disease.

A thorough evaluation or Alzheimers

disease will include physical,

neurological, and psychological

testing:

a physical examination, including

blood, urine, liver, and thyroidtests; memory, language, problem

solving, attention, and counting

tests;

depression screening; and

brain imaging.

It is entirely appropriate to ask or areerral to a specialist or this testing

i the primary care physician is not

experienced with conducting them, or

to go directly to a specialist in the rst

place.



Types o Specialists

There are many medical proessionals

who may be able to help with

diagnosis and aterward. Each is

trained in dierent specialties,

including those called a neurologist,

neuropsychologist, gerontologist,

geriatrician, geriatric nurse

practitioner, geriatric psychologist, or

gero-psychologist.

A good place to start a search

would be with the American

Medical Associations web-based

DoctorFinder to search or

physicians by name, location, or

specialty (neurology is an option).

The American Academy o Neurology

website has a search on its Patients

& Caregivers page called Find a

Neurologist In Your Area, where you

can choose Alzheimers Disease

as a specialty. Other options are the

American Psychological Association

website with a Psychologist Locator

Search and the American Geriatrics

Society website with a Find a

Geriatrics Health Care Provider

Reerral Service.

Please note that describing options or

nding a specialist to t an individuals

or amilys needs does not constitute

an endorsement or recommendation

by the BrightFocus Alzheimers

Disease Research program or the

BrightFocus Foundation, and the

organization is not responsible or the

content o any reerenced website.



Stages o Alzheimers Disease

Common early symptoms o

Alzheimers include conusion,

disturbances in short-term memory,

problems with attention and spatial

orientation, personality changes,

language difculties, and unexplained

mood swings. Recently, scientists

have identied a condition that

alls between normal age-related

memory loss and dementia, called

mild cognitive impairment (MCI).

Individuals with MCI have persistent

memory problems (or example,

marked orgetulness and difculty

remembering names and ollowing

conversations), but are able to

perorm routine activities without

more than usual assistance. MCI oten

leads to Alzheimers, but while all

those who progress to some orm o

dementia go through a period o MCI,

not all patients exhibiting MCI will

develop Alzheimers disease.

From three to teen stages and

sub-stages have been identied or

Alzheimers disease. The our stages

listed below represent the general

progression o the disease, beginning

beore symptoms are perceptible.

However, since Alzheimers disease

does not aect everyone in the same

way, these symptoms will likely vary in

severity and chronology. There will be

uctuations, even daily, and overlap

o symptoms. Some people will

experience many symptoms, others

only a ew, but the overall progression

o the disease is airly predictable. On

average, Alzheimers patients live or

eight to ten years ater diagnosis, but

this terminal disease can last or as

long as 20 years.

In all stages, symptoms generally

relate to progressive impairment

o mental processes and memory

unction, communication problems,

personality changes, erratic behavior,

dependence, and loss o control over

bodily unctions.

Pre-symptomatic Physical conditions

connected to Alzheimers disease

exist in a persons body long beore

symptoms are evident. State-o-the-

art equipment is being developed

to detect subtle signs o Alzheimers

prior to noticeable memory loss. From

the patients perspective, Alzheimers

disease can be described in three

general stages o progression:



Mild (stage 1) In addition tominor memory loss and difculty

learning, rst-stage Alzheimers

disease may cause a loss o

energy and spontaneity, as well as

mood swings, conusion, trouble

communicating, and difculty

organizing. Those with Alzheimers

disease may become withdrawn,

avoiding new people and places

in preerence or the amiliar.

Understandably, they can also

become angry and rustrated.

Moderate (stage 2)Duringthe second stage o Alzheimers

disease, the patient begins to

need help carrying out anything

but simple tasks. Recent events

and personal histories may be lost

and the present conused with

the past. There may be difculty

recognizing amiliar people,

as well as in speaking, reading,

writing, and dressing, and difculty

sleeping well. A person with

moderate Alzheimers disease is

clearly becoming disabled.

Severe (stage 3) Third-stageAlzheimers disease brings ull-

blown disability, with possible

loss o the ability to eed onesel,

to speak, to recognize people,

and to control bodily unctions.

Memory weakens still urther and

may nearly disappear. The patients

weakened physical state creates

vulnerability to other diseases and

breathing problems, especially or

those conned to bed.



Current Medical Treatmentsor the Symptoms o Alzheimers Disease

Currently, there is no treatment known

to cure Alzheimers disease. However,

there are medications that can help

control its symptoms. In addition,

medical treatments are also available

to help manage agitation, depression,

or psychotic behavior (hallucinations

or delusions), which may occur as the

disease progresses. Beore taking any

medications, over-the-counter drugs,

supplements, or herbs, consult a

physician or a thorough evaluation in

order to make an inormed decision.

There are ve FDA-approved drugs

used to treat Alzheimers disease.

Four o them, called cholinesterase

inhibitors, are designed to regulate

symptoms and delay the course

o Alzheimers: Cognex (tacrine),

Aricept (donepezil), Exelon

(rivastigmine), and Razadyne

(galantamine). These drugs slow the

metabolic breakdown o acetylcholine,

an important brain chemical involved

in nerve cell communication. Those

suering rom Alzheimers have low

levels o acetylcholine, and these

drugs make more o it available

or communication between cells.

This may help slow the progression

o cognitive impairment and be

temporarily eective or some

patients with Alzheimers. However, as

Alzheimers disease urther develops,

less acetylcholine is produced, and the

drugs tend to lose their efcacy.

All our o the above medications

are approved or the treatment

o mild to moderate symptoms

o Alzheimers disease in its early

stages. They are aimed at slowing

degeneration and even improving

mental unction, including thinking,

judgment, recognition, and memory.

Eectiveness and results vary rom

person to person, and some drugs

may be better tolerated than others

by certain individuals. Side eects can

include nausea, dizziness, headache,

atigue, insomnia, muscle cramps, and

weight loss.



Cognex, though eective, has more

adverse side eects than the other

medications and, although still

available, is now rarely prescribed.

Aricept appears to have a limited

slowing eect on the progression

rom mild cognitive impairment to

Alzheimers. Individuals with MCI

have memory problems, but are

able to independently perorm daily

activities; however, MCI oten leads

to Alzheimers disease. In 2006, the

FDA also approved Aricept or the

management o severe Alzheimers

symptoms.

Namenda (memantine) is the th

FDA-approved drug and is used or

the treatment o moderate to severe

Alzheimers. Namenda is an N-Methyl-

D-Aspartate (NMDA) receptor

antagonist. NMDA receptors control

the actions o a chemical messenger

called glutamate that is released

in large amounts by Alzheimers-

damaged brain cells. Namenda

appears to protect the nerve cells

against excess amounts o glutamate.

Side eects may include atigue,

dizziness, and headache.

All o these Alzheimers drugs are

administered orally. However, in 2007

the FDA approved the use o an Exelon

patch that delivers medication through

the skin.

Depression is common in the early

stage o Alzheimers, and it can be

treated. For individuals in the middle

stages o the disease, there are also

medications to control depression,

anxiety, and psychotic behavior,

including paranoid thoughts,

delusions, and hallucinations. The

patient can also become agitated and

resistant to care, which may escalate

into combativeness. Medications or

these symptoms are considered when

non-medication alternatives have

ailed and/or these symptoms put the

person with Alzheimers or others in

danger.



Research on Potential Treatmentsor Alzheimers Disease

There is a strong Alzheimers disease

research community, and many

potential treatments are being

investigated in laboratories and

in human clinical trials. Scientists

continue basic research on therapies

that could potentially clear the protein

plaques in the brain. The saety and

efcacy o possible treatments are

being tested on humans, including

drugs that could remove plaques,

immunotherapy (vaccination) with

beta amyloid antibodies, non-steroidal

anti-inammatory drugs (NSAIDs),

and statins (drugs used to lower

cholesterol). The protective eects o

antioxidants (vitamins A, C, and E) and

omega-3 atty acids (ound mainly

in sh such as tuna and salmon) are

also being tested in trials. To date, no

consistent results have emerged rom

various studies, but urther research

and uture results rom rigorous trials

should help clariy the benet o these

and other prospective treatments.

Those who have accepted the terminal nature o the disease oten nd an inner peace and

a greater sense o perspective. They are able to prepare themselves and their amilies and

live much more ully.



Emotional Impact o Diagnosis

Upon a diagnosis o Alzheimers, the individual andamily members will need time to prepare emotionally

or the progressive and terminal nature o this disease

The person with Alzheimers and his or her loved ones will likely be overwhelmed

and need time to absorb the news. Descriptions o some normal and common initial

emotions ollow.



Efect on Those with Alzheimers Disease

It may take time to work through the

stages normally associated with the

diagnosis o a terminal illness: denial

and isolation; anger and resentment;

bargaining; depression; and, nally,

acceptance. In moving through the

stages o adjustment, patients need

to reach out or support to amily and

riends, as well as to proessionals,

such as physicians and counselors. It

oten helps to talk in support groups

to others with the disease. Many

people worry less as they gather more

inormation. Some patients derive

comort rom spiritual consultation,

and those who dont belong to ormal

religious groups can still gain insight

and perspective rom religious and

philosophical texts. Formal counseling,

as well as heart-to-heart discussions

with close riends, can also be very

helpul.

Those who have accepted the terminal

nature o the disease usually nd an

inner peace and a greater sense o

perspective. They are able to prepare

themselves and their amilies and live

much more ully than those in denial

(that is, those denying that they have

the disease or reusing to accept the

meaning o the diagnosis). Those

accepting and learning about the

diagnosis realize there will be time

to continue enjoying lie, to make

important plans and decisions, to

engage in pleasurable activities, and

to come to closure or completion

in many areas. Additionally, some

individuals with mild Alzheimers

gain satisaction by becoming

advocates or research and care

through volunteer activities, speaking

engagements, and lobbying eorts.

Many or even most recently diagnosed

patients choose to wait beore telling

amily members about their illness. For

some, letting others know may bring

a sense o nality to the diagnosis.

Revealing this inormation to amily

members can be emotionally painul

or all concerned, and everyone will

need to work through their own

eelings about the illness. This is a

difcult time, but generally individuals

with Alzheimers eel a sense o relie

when the inormation is shared and no

longer concealed.



Adult children will also need to adjust

to the role reversal in caring or a

parent. They may eel overwhelmed

by the looming responsibilities o

working within or outside the home,

caring or their own children, and

helping their parent. They may eel

angry at the burden alling to them.

Adult children who do not live close by

may eel guilty, not ully comprehend,

or perhaps even deny the realities o

the disease. Family members should

Efect on Family Members

I there is a spouse, she or he will

likely need to work through strong

emotions related to the diagnosis.

Many times spouses also have to

deal with their own health problems.

They may ear a uture that will be

very dierent rom the one they had

planned. Husbands and wives oten

are required to reverse roles and

take on unamiliar tasks. Depending

on their relationship, a diagnosis

o Alzheimers can bring couples

closer together or it can alienate

them. Spouses need to accept that

the person they have known and

loved may change dramatically in

personality and behavior, and there

will almost without doubt come

a time when their loved one does

not recognize them. The spouse

may appreciate getting together

with others in a similar situation to

converse and to discuss these eelings.

He or she may seek oers o help with

meals, transportation, and other tasks,

as well as simple, kind acts such as

visits and respite. Caregiver training

and support groups can also be very

helpul and are recommended. In

some cases, proessional counseling

may be needed.



support the main caregiver and

oer help; those at a distance can

undertake those tasks that do not

require proximity. As distressing as a

parents Alzheimers diagnosis can be,

this is the time to begin to accept the

uture, build a support network, gather

inormation to help alleviate ears, and

plan or the road ahead.

Children and adolescents are also

aected; they may eel sad, rustrated,

angry, or araid i someone in the

amily, a grandparent or example,

is diagnosed with by Alzheimers.

Younger amily members should be

encouraged to ask questions and

express eelings, which should be

honestly addressed. They need to

understand that although the loved

one may act dierently, there are still

activities they can enjoy with their

relative, such as helping with chores,

listening to music, or reading a book.

Teachers and guidance counselors

should be made aware o the

situation. There are also books and

support groups that deal specically

with young people.



Planning or the Future

The amount o time it takes to adjust to a diagnosis oAlzheimers will vary rom person to person, both orthose with the disease and their loved ones.

Generally, these care managers charge

an intake ee and an hourly rate

based on location, their qualications,

and the extent o services. Some

organizations may subsidize the cost.

The BrightFocus Alzheimers Disease

Resource List includes inormation on

nding GCMs.

A long-range plan should include

gathering important nancial, legal,

and health inormation; identiying

responsibilities; nalizing legal

documents (advance directives);

and discussing long-term caregiving

options.

Open communication and inormation

sharing among everyone involved

can help determine when the time is

right to begin planning or the uture.

Certain matters should be taken care

o as quickly as possible, and although

it may seem daunting, breaking down

tasks and dividing responsibilities can

alleviate some stress.

As a starting point, amily members

may want to meet with the patient

to discuss his or her needs and

wants, decide on a care plan, sort

responsibilities, build a support

network, and nd outside resources. A

mediator or objective third party can

be helpul. The amily may consider

hiring a proessional geriatric care

manager (GCM), who can evaluate

the situation and identiy solutions

or various aspects o long-term care.



Employment

When rst experiencing Alzheimers

symptoms, a worker should consult

a lawyer to determine rights and

responsibilities. For instance, in some

cases an employer may have to provide

accommodations, while in others an

employee may be at risk or discharge.

Also, it may prove useul or the worker

to discuss with an attorney whether

insurance, retirement, and disability

benets are available through work

and/or ederal lawssuch as the

Americans with Disabilities Act and

Family Medical Leave Actand through

state programs. A lawyer may advise

an employee to obtain urther benet

inormation rom an employer. Because

Alzheimers is a degenerative disease,

it may be advisable to bring a trusted

amily member or riend to meetings,

although an attorney sometimes may

advise against the presence o third

parties in order to preserve attorney-

client privilege.



Gathering Important Inormation

Soon ater a diagnosis, nancial, legal,

and health records need to be put

in order. The ollowing inormation

should be gathered and kept together

in a single place that is known to at

least two amily members, caregivers,

or trusted riends.

General

Name, address, and Social Securitynumber

Drivers license, passport, birthcerticate, and marriage certicate,

i any

Insurance inormationincludingMedicare and Medicaid numbersand lie, health, homeowners, and

automobile policies and policy

numbers

Veterans Administration claimnumber, i applicable

Names, addresses, and phonenumbers o lawyers, nancialadvisors or accountants, and

insurance agents

Financial

Bank records, including all bankaccount numbers. Consider giving

a general and durable power o

attorney and an advance directive

or health care that will permit

trusted amily or riends to assist

with nances and health care

decisions and possibly preservesavings, should the patient need

long-term care. I the patient loses

capacity and doesnt have such

documents in place, a costly and

intrusive guardianship through the

courts may be required. In some

cases it may be advisable to put

assets in the name o a spouse orother loved one, but legal advice is

essential beore doing any nancial

planning o this type.

Inormation on all sources oincome, including pension plans,

IRAs, Keogh plans, and stock

certicates



Tax records

Inormation on property owned(including real estate), mortgage

payments, or titles to property

Credit cards and account numbers,including personal identication

numbers (PINs) and security codes

Inormation on all loans oroutstanding debts, and on money

owed to the patient

Receipts/documents or any pre-

paid uneral/burial arrangements, i

applicable

Legal

Copies o the will or inormation

on its location; advance medical

directives; durable power o

attorney or health and/or

nances; and burial requests

(mortuary, burial plot, and deed)

Health

Names, addresses, and phonenumbers o physicians, hospitals,

etc.

Inormation pertaining to medicalhistory, medications and dosages,

and medical devices



Division o Responsibilities

To alleviate some o the stress o

dealing with the uture, the amily may

want to hold a meeting to discuss

plans and division o caregiving

responsibilities. No one can predict

what will be needed or every stage

o the disease, so emphasis should

be on the immediate uture, while

considering possibilities or the longer

term. Prior to the meeting, gather

inormation and resources. Be sure to

include the person with Alzheimers

in the discussions, but keep in mind

that the individual may be resistant

to suggestions and still overwhelmed

emotionally. Other amily members

should allow him or her to express

needs and desires, keep their minds

open, and make positive suggestions.

Disagreements will almost inevitably

occur, but everyone should be

encouraged to voice their opinions

and make recommendations.

Each member should honestly assess

personal preerences, nancial

abilities, and time availability to

determine his or her appropriate role.

Drat a written plan that includes

decisions on allocating responsibilities

(on-site and long-distance), costs,

and time commitments. These

responsibilities can be divided as

ollows: medical needs, including

communication with physicians and

keeping track o medical records;

daily living activities (bathing,

dressing, etc., as well as cleaning,

meal preparation, transportation,

and shopping); and nancial and

legal issues. Although a written plan

is recommended, it should also be

adaptable to the persons changing

needs and those o caregivers. Put a

system in place to ensure essential,

regular communication among amily

members.

As much as possible, amily

members should be supportive o

one another, oering assistance and

respite to the primary caregiver, and

staying up to date on the physical

and emotional condition o the

person with Alzheimers. They

should take advantage o the many

resources available or caregiver

support, including those listed in

the BrightFocus Alzheimers Disease

Resource List.



Home Saety

The saety o the home can be

a concern or some Alzheimers

patients, particularly i they begin

to wander. Caregivers should do

a room-by-room saety check and

periodically reassess needs as the

disease progresses. Not all changes

must be made immediately; some will

be more appropriate in the later stages

o Alzheimers. It is possible to modiy

and adapt the home while keeping the

surroundings amiliar and comortable.

The ollowing are general precautions,

to be instituted as appropriate

Keep important and emergency

phone numbers handy.

Ensure adequate lightingthroughout the home; install night

lights.

Keep entryways, halls, and oorsree o clutter, extension cords, and

scatter rugs; avoid placing urniture

in walking areas.

Secure locks on windows anddoors; keep a spare key hidden

outside the home, or give one to a

neighbor or nearby riend.

Use childproo locks or toxicsubstances, medications, and

alcohol.

Ensure that smoke and carbon

dioxide detectors are in working

order.

Install handrails on stairs, grab bars

in bathrooms, and other devices

designed or those who need

physical assistance.

Remove and saely store potentialhazards such as weapons, plastic

bags, and power tools.

Protect computers andinormation stored on them.

Consider labeling doors to roomssuch as bedroom, bathroom,

etc.

Ensure that emergency plans are inplace.



I the Alzheimers patient begins to

wander, extra precautions need to

be taken to secure the home. Many

companies oer saety devices such

as double locks, alarms, and items

used to disguise exits. An identication

or medical bracelet or the individual

is also a good idea. Neighbors, local

merchants, and police should be

notied in case the person manages to

leave the home without a companion.

The BrightFocus Alzheimers Disease

Resource List includes websites with

more inormation and products or

ensuring home saety.



Driving Saety

Deciding when the person with

Alzheimers should stop driving can

be difcult, and the situation should

be calmly and positively discussed,

ideally beore problems arise. Many

people in the very early stages o

the disease may be able to continue

driving saely, but even then they

should stay on amiliar short routes

in daylight and good weather. As the

disease progresses, driving ability

needs to be careully observed and

reassessed. Consider the persons

reexes, coordination, reaction time,

eyesight, hearing, and ability to orient

him- or hersel. Recurring problems

such as making slow decisions, ailure

to observe trafc signals, and hitting

curbs are warning signs.

When driving becomes unsae,

it may be necessary to enlist an

authority gure (such as a physician

or police ofcer) to reinorce the

decision. To ease the transition,

investigate and oer alternative

orms o transportation, and reduce

the number o activities that require

driving. For example, prescriptions and

groceries can be delivered rather than

picked up at a store. Driving is oten

part o an individuals social lie, so try

to nd other ways to continue these

interactions, such as asking riends

and amily to visit. I the person insists

on keeping the car keys, it may be

necessary to give him or her keys that

dont work, temporarily park the car

elsewhere, or disable the engine.


33/56


34/56



Legal Matters

Ideally, the legal documents described

below will be in place beore a

diagnosis o Alzheimers. I not, the

patient and a caregiver or companion

should consult a lawyer as soon as

possible, because legal instruments

cannot be completed once a person

is legally incompetent. Those in

the early stages o the disease are

not automatically assumed to be

incompetent, and they will probably

be able to understand the issues and

make decisions.

The inormation provided below

contains general statements and

does not constitute legal advice.

A amily lawyer may be retained

or legal advice, but there are also

attorneys who specialize in elder

law. Lawyers can help interpret state

laws and ensure that the wishes o

the patient are carried out. Elder

law attorneys are experts in legal

matters o the aging, such as long-

term care, Medicare, Medicaid, taxes,

and estate planning. Local Area

Agencies on Aging may be able to

provide reerrals or legal advice, and

low-cost legal services are available

through state legal aid societies.

(Area Agencies on Aging were

established through the ederal Older

Americans Act to help Americans

60 and older live independently at

home.) The BrightFocus Alzheimers

Disease Resource List contains more

inormation on elder law attorneys

and legal assistance.

Although newly diagnosed people will

likely be emotionally distressed, they

should still be encouraged to actively

participate in these legal discussions.

This may lead to a sense o greater

control and calmness. Those who may

already be slightly impaired should be

involved as much as possible and will

likely be capable o making at least

some decisions. I the Alzheimers

patient resists taking action, a rm but

understanding amily member, good

riend, or objective proessional may

be required to ensure a secure legal

uture. In all cases, individuals with

Alzheimers need to be extremely

careul in choosing those who will act

as their agents and in deciding which

powers will be granted.



Legal medical directives should

include establishing an advance

health care directive (also known

as a living will). Legal nancial

documentsa durable power o

attorney or nances, a will, and

possibly a living trustalso need to

be nalized i they are not already in

place. These documents should be

revisited periodically to ensure they

are up to date. Since state laws vary,

the documents may need to be re-

examined i the person moves. Family

members or caregivers should know

where the originals are located and

have copies. The patients physician

should have copies o health-related

legal documents.



Advance Medical Directives

rom the agreementis not willing or

able to carry out the duties.

Advance health care directives allow

patients, while they are still able, to

decide upon and express their wishes

regarding end-o-lie care. Later,

they may no longer be capable o

communicating these desires. With

an advance health care directives, the

patient can careully consider what

measures should be taken to prolong

lie. Oten, speciying these actions

eases the emotional burden o the

loved ones. A living will may contain

a do not resuscitate order and other

treatment limitations that instruct

health care personnel not to perorm

aggressive medical interventions in

situations where they might be used. I

a physician or acility cannot honor a

living will, they must inorm the patient

or the patients representative and

assist in transerring the patient to a

acility that will honor it.

An advance health care directive

must be drawn up beore the

patient becomes incapacitated.

This document allows the patient

to appoint a trusted person to make

medical and health decisions when

the individual can no longer do so.

Sometimes these documents go

into eect immediately, while others

become active when a specied event

occurs.

It is important to choose the

administrator careully and to ully

discuss detailed wishes. This legal

agent should be someone who knows

the patient very well but can remain

level-headed and exible in the ace

o change and emotional stress. The

individual who is asked must rst agree

to take on the responsibility. He or

she may need to make nal decisions

on minor and major medical issues,

including lie support. Appointing an

alternate is advised in case the chosen

personwho has the right to withdraw



Finance-related Documents

In establishing a durable power o

attorney or fnances, the individual

authorizes a amily member, riend,

or proessional to act as an agent or

proxy on his or her behal in making

nancial decisions including banking,

investments, tax, and retirement

matters. While the individual can direct

his or her proxy, it is imperative that this

person is careully chosen, trustworthy,

and exercises good judgment,

especially as the Alzheimers patient

becomes incapacitated.

I the person with Alzheimers

becomes legally incompetent beore

a durable power o attorney or

nances can be drawn up, or i there

is disagreement regarding the proxy,

a conservatorship or guardianship

may have to be established through

the court to handle nancial matters.

Although it has the advantage o legal

supervision, a conservatorship can

be expensive and time consuming to

establish, requiring an investigation,

a hearing, and a judgment about the

individuals competency. It is normally

easier and quicker to establish a

durable power o attorney or nances

as soon as possible. A conservator

does not make health decisions.

A will details how an individuals

assets and estate will be divided upon

death. Since the person must be o

sound mind, a will should ideally

be in place beore an Alzheimers

diagnosis. A newly diagnosed patient,

amily member, or proessional should

ensure that a will has been completed

and is up to date. In the absence o a

will, each state determines distribution

o assets, which typically go to

spouses, children, or other amily

members. Some people choose to

establish a living trust to distribute

assets ater death. A living trust is

established when the grantor(i.e., the

person with Alzheimers) designates

someone to serve as the trustee. The

trustee manages assets o the trust and

ensures proper distribution o them

ater the grantors death.

Usually, the primary caregiverwill be a loved onea spouse,

an adult child, or a closecompanion. Even in theearly stages o Alzheimers,caregiving can be |an extremelydemanding, 24-hour-a-daytask.



Caregiving

For Those Who Live Alone

Some patients continue to live alone

in the early stages o Alzheimers. I so,

amily members, riends, or neighbors

should check on the person daily to

see i assistance is needed. Someone

close should have an extra set o

house keys as well as emergency

contact inormation.

There are a variety o services available

or people with Alzheimers who live

by themselves. These may be paid or

ree and include in-home assistance,

housekeeping, meal preparation,

and transportation. Family members,

riends, neighbors, local religious

organizations, and community



volunteer groups can help with other

practical matters such as shopping and

medical appointments. Physicians, local

Agencies on Aging, and organizations

listed in the BrightFocus Alzheimers

Disease Resource List can provide

inormation on available services.

At some point, the person with

Alzheimers will be unable to perorm

daily tasks and require more care

and supervision. This will usually

be determined by those who are in

closest contact, but they may want

to ask others to help discuss plans

with the Alzheimers patient. It is best

to careully consider long-term care

options as early as possible, beore

a serious event orces a less-than-

ideal choice. Saety is paramount, and

once it is apparent that the person

with Alzheimers is not sae living

alone, there should be a transition to

a place that oers more assistance.

I the person resists a transer, it may

be helpul to create an excuse (e.g.,

work is being done on the home) or

persuade him or her that the situation

is temporary (even though it is

permanent).



Staying Active

Keeping active on all levels can be

helpul to those with Alzheimers

disease. Although some newly

diagnosed patients may want to

withdraw rom their usual activities

out o depression or embarrassment,

doing so can actually worsen a

persons condition. Even while

recognizing their limitations, patients

can prolong the quality o lie

by maintaining a healthy level o

stimulation physically, mentally, and

socially, and by avoiding stress, which

can tax memory and concentration.

Suggestions or benecial activities

include:

Interaction with others, including

amily, riends, children, and pets.

Visitors can provide an appreciated

human connection.

Engaging in creative activities,avorite pastimes, and hobbies;

playing games and solving puzzles.

Listening to music, which canhave a calming eect and trigger

vivid memories o the past; singing

amiliar tunes.

Looking at photographs and homevideos, which can stimulate the

mind, elicit memories, and oer a

calming sense o continuity.

Perorming simple householdtasks that do not rely too much

on memory, like meal preparation,

gardening, or light cleaning.

Taking part in activities such as

being taken or a drive, going

on nature outings or to the zoo,

and visiting quiet museums or art

galleries. These should be shared

with a companion who can ensure

saety.

Initiating or continuing a light,regular exercise routine.



Getting involved in a support group.

social situations, and adjustments in

day-to-day living, as well as providing

inormation on community resources.

They may oer activities designed to

stimulate memory and keep the mind

active. These groups can contribute

greatly to the quality o lie. Consult

the BrightFocus Alzheimers Disease

Resource List or ways to nd support

groups.

In support groups, people with

Alzheimers are oten better able

to come to grips with this disease

and the uture by expressing their

eelings and thoughts to others. For

many Alzheimers patients, support

groups help in digesting the news

o the diagnosis, overcoming denial,

and adjusting to the changes in their

lives. Support groups oer practical

advice on dealing with memory loss,



Role o the Caregiver

Usually, the primary caregiver will be

a loved onea spouse, an adult child,

or a close companion. Even in the

early stages o Alzheimers, caregiving

can be an extremely demanding,

24-hour-a-day task. Caregivers need

to be exible and understanding in

dealing with changes in behavior and

personality. They must also be able to

communicate with amily, riends, and

proessionals about their loved ones

condition.

Many resources and books oer

advice on dealing with those who

have Alzheimers disease; keep these

resources handy. (Many can be ound

in the BrightFocus Alzheimers Disease

Resource List). In some communities,

caregiver consultation and counseling

is available. Although each individual

is dierent, there are many strategies

that can be used to make lie easier

or both the patient and the caregiver.

Recommended strategies include:

Speaking clearly and simplywhile looking the person in the

eye; giving easily understood

instructions in a normal tone o

voice.

Compensating or changing

capacities and assisting in

remembering inormation. Memory

aids such as small books with

names, addresses, phone numbers,

directions, maps, and ideas can

be useul. The patient or caregiver

can label items around the house,

post reminders or daily tasks,

keep calendars with appointments,

and label photos with inormation

about those pictured.

Maintaining contact with the

Alzheimers patients physician

through regular updates on any

changes in routine, behavior,

or moods. Ongoing or new

treatments or Alzheimers diseaseand associated symptoms, as

well as therapy or other medical

issues should be discussed. The



patient and amily may also

want to consider participating

in clinical trials that test possible

new Alzheimers treatments or

investigating Alzheimers disease-

related issues. Inormation about

ongoing trials can be ound at

clinicaltrials.gov, researchmatch.

org, and other websites in the

BrightFocus Alzheimers Disease

Resource List.

Establishing routines. The

amiliar is calming or those with

Alzheimers disease, and they

may enjoy simple, repetitive tasks.

Choose things they can succeed at

to optimize pleasure and minimizerustration.

Engaging the person in simpleactivities that build on current

skills, rather than attempting to

teach new ones. The patient will

likely continue to be interested

in and enjoy amiliar pastimes.

Keep in mind that some times o

the day may be better than others

or proposing activities, and the

individual should not be orced

into doing anything. Mental state

can also change rom day to day.

Using validation to enter the

persons world. It is very unlikely

that the caregiver or anyone else

will be able to change the patients

concept o reality. It is much easierto respond positively rather than

try to correct misconceptions.

Avoid arguing with the person, as it

will only rustrate both the patient

and the caregiver.

Using redirection and distraction i

the person wishes to do something

that is not possible (e.g., drive

a car). Oten, presenting an

appealing option will succeed.

Avoiding situations and environmental

actors like noisy crowds and violent

TV programs that may righten or

agitate the patient. Oten agitation

is a way o communicating stress,

and modiying the atmosphere may

change the behavior.



Caregiver Stress

Fullling and adapting to the

changing needs o the person with

Alzheimers, dealing with unamiliar

behavior and practical matters, and

handling the grie o eventual loss

takes a physical and emotional toll

on caregivers. Those with Alzheimers

and their caregivers should discuss

with each other the many aspects o

this disease as soon as possible. Early

communication can help alleviate

the caregivers guilt and rustration

in the uture. However, even in

the best circumstances, caregivers

oten become both physically and

emotionally exhausted, making them

susceptible to illness and depression.

To avoid this, caregivers need to ocus

on their own health and recognize the

signs o stress. They may experience

denial, depression, irritability, anger,

and anxiety, as well as physical

warnings such as trouble sleeping,

exhaustion, and health problems.

There are many ways to relieve

pressure and reduce the stress o

caregiving, some o which include:

taking time out to relax, engaging

in an enjoyable pastime, keeping

a list o tasks, writing in a journal,

maintaining a sense o humor, eating

right, exercising, and getting proper

rest. Caregivers earn the right to give

themselves credit or doing the best

they can in a very trying situation.

As the disease progresses, the

individual with Alzheimers will

become more dependent and less

able to participate in many activities.

The primary caregiver may become

resentul and eel underappreciated

and isolated. Any encouragement,

emotional support, and social

interaction amily and riends can

provide the caregiver are thereore

especially important in helping

to avert these negative eelings.

The caregiver should be able to

turn to receptive amily members,

riends, or proessionals or practical

assistance as well. Those close to the

caregiver need to provide necessary

respite and share in caregiving as

much as possible. Out-o-town

amily members should regularly

communicate and oer to help with

those responsibilities that can be

undertaken rom a distance. They

can explore and turn to community

services. In this way, the caregiver

will establish a support network o

resources.



Caregiver Support Groups

Many caregivers can greatly benet

rom participation in support groups,

some o which meet physically

on a regular basis and others that

communicate on the Internet. Both

oer advice, inormation, resources,

and comort. Sometimes amily

members and riends are not as

responsive or sympathetic as the

caregiver would like. Those in

support groups may have a greater

understanding because they are in

similar situations. Many become like

amily or close riends as they discuss

common problems, coping strategies,

and caring or onesel as well as the

Alzheimers patient. Support groups

can be located using the BrightFocus

Alzheimers Disease Resource List.


47/56



Short-term and Temporary Care

the caregiver, who may use the time

to take a break rom patient-care

responsibility. Costs vary, depending

on services. These programs must

be paid or privately, but some may

be subsidized, as the majority o

such organizations are operated on a

nonprot or public basis.

Home health agencies provide support

services to the Alzheimers patient in

the home and access to outside care

i necessary. Services can include

skilled care such as rehabilitation and

administering injections, custodial

care (cleaning, meal preparation, etc.),

companionship, and transportation.

Medicare does not cover this type

o care. When choosing an agency,

check into licensing, sta credentials,

and whether the agency provides the

needed level o care and is aordable.

Adult day centers provide structured

programs in which the patient is

dropped o in the morning and

picked up in the aternoon or

evening. Participants can spend the

day engaged in supervised activities

such as games, crat projects, and

light exercise. Some programs also

oer meals, transportation, and

even proessional services such as

counseling and physical therapy.

Adult day services are oten a pleasant

prospect or both the patient and



Long-term Care

Independent living or retirement

communities are or seniors who are

generally healthy and able to care or

themselves, so these are not usually

a long-term solution or those with

Alzheimers. They oer housing

with recreational, educational, and

social activities geared specically to

older people. Meals, housekeeping,

transportation, and planned activities

may also be available. Some

communities oer a wide variety

o amenities, including gol, tennis,

pools, and tness centers. Costs vary

depending on the size o housing,

location, services, and amenities.

Most communities accept only private

methods o payment, but there may

be some subsidies or low-income

individuals.

Assisted livingacilities oer private

rooms or apartments with in-

house care and social activities or

older people. In the continuum o

care, assisted living bridges the gap

between home care and nursing

homes. It provides services or those

who are not able to live independently

but do not yet require the level o

care provided by a nursing home.

Many acilities have special sections

called memory care unitsor those

with Alzheimers; these are most

appropriate or those in the early to

middle stages o the disease, who

need some regular assistance short

o acute medical care. They can oer

a home-like setting, 24-hour sta

coverage, housekeeping and meal

assistance, therapeutic activities,

and in-house medical services i

needed. Costs or assisted living

residences vary greatly, and depend

on the size o rooms, amenities,

services provided, and location. The

residences management should be

able to answer questions concerning

base rates, ees or additional services,

occupancy levels, sta and their

training, ownership, and available

assistance programs. Obtaining this

inormation is crucial in choosing the

appropriate residence.



Lie care communities or continuing-

care retirement communities oer

varying levels o care and typically

require a lietime commitment.

They begin as independent living

acilities, then oer continued care to

residents as they age and their needs

change. Residents must be able to

live independently at rst and may

later be transerred rom an apartment

to an afliated nursing home or

higher levels o care. Some o these

communities have special programs

or those with Alzheimers. Normally

there is a substantial entrance ee as

well as monthly maintenance ees, the

costs o which vary greatly depending

on the size o the room, amenities,

and region o the country.

People with small incomes and

savings may investigate naturally

occurring retirement communities,

which have begun operating in some

regions. (Denitions vary somewhat,

but a naturally occurring retirement

community, or NORC, is generally

area in which ty percent or so o the

residents are 60 or older who have

aged in place, i.e., not moved there

specically or retirement.) For those

with resources, ull-time live-in care in

their own homes may be an option.

Nursing homes or skilled nursing

acilities oer long-term, 24-hour care

or people with late-stage Alzheimers.

Many acilities have special sections

or Alzheimers patients. They provide

rooms, meals, supervised activities,

and necessary therapy to residents.

Nursing homes must be licensed by

the state and certied by Medicare

and Medicaid, so they are subject

to strict standards, inspections, and

evaluations. Medicare does not cover

indenite, long-term care; Medicaid is

available or those with low incomes

or whose resources are exhausted.



Hospice Care

Hospice care is available in the home

or in an assisted living acility or those

with terminal illnesses and six months

or less to live. In hospice, residents are

treated or comort rather than to cure

disease and prolong lie. Hospices

seek to preserve an individuals dignity

and the highest quality o lie or as

long as possible, while providing

support or amily members. Medicare

covers the cost o hospice care, and it

is available to those with Alzheimers.

However, it is oten not used because

it is difcult to determine how long

the person will live.



Choosing a Nursing Home

Many caregivers may be unable to

care at home or loved ones who

are in the nal stage o Alzheimers

disease. While the decision to move

the person to a nursing home is

extremely difcult, it may be the best

option. The wisest choices are made

when the transition is planned well

in advance. Waiting too long could

allow a traumatic event to dictate

hasty choices and impulsive actions.

Family members should consider the

needs and wants o the person with

Alzheimers and the caregiver when

choosing a acility.

The ollowing may be helpul in

deciding on a acility:

Gathering inormation on optionssoon ater diagnosis, so that i the

need arises, it will be available.

Finding local acilities and settingup appointments to evaluate

the accommodations, activities,

programs, and services oered;

making unannounced visits.

Looking closely at sta and their

interaction with residents. Finding

out i employees are trained to

deal specically with Alzheimers

disease.

Observing the demeanor o

residents and talking to their amily

members and visitors.

Making sure that the nursing homeis clean, well lit, ree o unpleasant

odors, and has an acceptable noise

level.

Checking on security i the

individual is prone to wandering.

Conrming that the nursing homeis licensed and certied. Reviewing

posted surveys.

Careully reviewing paymentoptions and agreements or

contracts.

More inormation on nding and

selecting the appropriate nursing

home is available on internet sites

suggested in the BrightFocus

Alzheimers Disease Resource List.



There is still time to enjoy lie, even i its in

a dierent way.

Some Final Words

Many people diagnosed with Alzheimers report thatthe more they know and talk about the disease, the

better they eel.

There is not yet a cure or Alzheimers

disease, but a tremendous amount

o research is being carried out by

dedicated scientists around the world.

In recent years, real progress has

been made. Our understanding o this

complicated disease has increased

enormously, and as the pieces o the

puzzle begin to come together, we

move closer to solving the mystery

and nding ways to treat, cure, and

prevent Alzheimers.

They want to understand what to

expect and to share their concerns

with loved ones, others who have the

disease, proessionals, and members

o support groups. These interactions

can help people eel more in control,

less anxious, and better able to take

advantage o the current treatments

and available sources o assistance.

The organizations and publications

listed in the BrightFocus Alzheimers

Disease Resource List are valuable

resources.

Ater those with Alzheimers have

adjusted to the new diagnosis and

prepared or the uture, the emphasis

should be on living and coping with

the disease. There is still time to enjoy

lie, even i its in a dierent way, and

their loved ones can nd comort and

support in an ever-growing network o

inormation, new treatments, liestyle

recommendations, and resources.



Living with Alzheimers Disease is produced by BrightFocus Alzheimers Disease

Research.

The ollowing publications are available rom BrightFocus in English and Spanish:

Care or the Caregiver: Managing Stress Saety and the Older Driver Staying Sae: Wandering & the Alzheimers Patient Understanding Alzheimers Disease: Its Not Just Forgetulness

Available in English only:

Through Taras Eyes: Helping Children Cope with Alzheimers Disease

For more inormation, visit our website www.brightocus.org/alzheimers.

Para inormacin en espaol, visite www.brightocus.org/PubsEspanol.

To order BrightFocus publications

Call 1-855-345-6ADR;

Email [email protected]; or

Visit at www.brightocus.org/alzpubs.

BrightFocus Foundation is the new name or American Health Assistance Foundation

Our thanks to Lawrence A. Friedman, attorney at law, www.SpecialNeedsNJ.com; Bridgewater, NJ or reviewing the

section on legal advice


55/56

For more inormation, visit our website

www.brightocus.org/ADRresources

Para inormacin en espaol, visite

www.brightocus.org/PubsEspanol

Disclaimer: The inormation provided here is a public service o BrightFocus Foundation

and is not intended to constitute medical advice. Please consult your physician or

personalized medical, dietary, and/or exercise advice; any medications or supplements

should only be taken under medical supervision. BrightFocus Foundation does not

endorse any medical products or therapies.


56/56

Alzheimers Disease Research

22512 Gateway Center DriveClarksburg, MD 20871

(301) 948-3244

1-855-345-6237

ax (301) 258-9454

[email protected]

www.brightocus.org/Alzheimerswww.brightocus.org/PubsEspanol