Alzheimer's Disease: Unraveling the Mystery by National Institute of Aging - HTML preview

PART

4

Improving Support

for Families

and Other

Caregivers

One of the greatest costs of AD can One of the hardest decisions that many be the physical and emotional toll

families face is whether and when to place

on family members, caregivers, and

a loved one with AD in a nursing home or

friends of people with the disease.

other type of care facility. Once this decision

The changes in a loved one’s personality and

is made, families must decide what type of

mental abilities; the need to provide constant,

care is best for the person and the family.

loving attention for years on end; and the demands Many investigators are working to identify of bathing, dressing, and other caregiving duties in strategies that can lead to improved quality of the later stages of the disease can be hard to bear.

care in various facilities, including adult day

Many caregivers must assume new and unfamiliar care centers, assisted living facilities, continuing roles in the family, and these changes can be both

care retirement communities, nursing homes,

difficult and sad. Not surprisingly, caregivers of

and special care units (separate areas within

people with dementia spend significantly more

nursing homes or assisted living facilities

time on caregiving tasks than do caregivers of

designed especially for people with

people with other types of illnesses.

dementia).

Who Are AD Family Caregivers?

Many primary caregivers are family raising children of their own.

Brothers and sisters: Siblings

members, and NIA-funded research Juggling two sets of responsibilities may assume primary responsibility

has shown that the value of informal is often tough for these members for care if they live close by. Many

family caregiving of people with

of the “sandwich generation.”

of these caregivers also are older

cognitive impairment adds up to

and may be coping with their own

Daughters-in-law: Many women

billions of dollars every year. Who

frailties or health problems.

in this group help take care of an

are these family caregivers?

older person with AD. They are

Grandchildren: Older children

Spouses: This is the largest group

the third largest group of family

may become major helpers in

of caregivers. Most are older, too,

caregivers.

caring for a grandparent with AD.

and many have their own health

Grandchildren may need extra

Sons: Although many are involved

problems.

support if their parents’ attention is

in the daily care of a parent with

heavily focused on the ill grand-

Daughters: The second largest

AD, sons often focus on the finan-

parent or if the grandparent with

group of primary caregivers is

cial, legal, and business aspects of AD lives in the family’s home.

daughters. Many are married and

caregiving.

ALZHEIMER’S DISEASE Unraveling the Mystery 63

P A R T 4 Improving Support for Families and Other Caregivers Research Findings Benefit

Caregivers

Although research on family caregiver

support is still in its early days, we have

already learned much about the unique

aspects of caregivers’ personalities and

situations. For example, it is well established that

AD caregivers often experience stress, anxiety,

depression, and other mental health problems as a

result of the continuing and demanding nature of

AD care. This chronic stress can have detrimental

effects on the physical health of caregivers. The

physical and emotional effects of AD caregiving

can last a long time, even after the death of the

person with AD.

On the other hand, research also has shown

that caregiving can have important positive effects,

AD caregivers do not all have the same

including:

psychological and physical response to caregiving.

For example, caregivers who have strong support

■ A new sense of purpose or meaning in life

systems and well-developed coping skills may be

■ Fulfillment of a lifelong commitment to a spouse

able to weather the stresses of caring for a loved

■ An opportunity to give back to a parent some

of what the parent has given to them

one with AD. Others who have few breaks from

caregiving responsibilities and/or have preexisting

■ Renewal of religious faith

illnesses may be more vulnerable to the physical

■ Closer ties with people through new relation-

ships or stronger existing relationships

and emotional stresses associated with dementia

care. Caregiver research is beginning to discover

effective ways to ease the burden of caregiving.

Researchers have learned that:

■ The information and problem-solving needs

of caregivers evolve over time as AD progresses.

Therefore, support programs should be tailored

to the needs of the caregiver at various stages of

caregiving. Programs can respond by offering

64 ALZHEIMER’S DISEASE Unraveling the Mystery

services and information geared to different

Where Are People with

stages of the disease.

Alzheimer’s Disease Cared For?

■ Traditions and attitudes about caregiving

vary across cultural groups. For example, some

■ Home

researchers have found that African-American

■ Assisted living facilities (those in the early stages)

caregivers use fewer formal in-home services than

■ Adult day care centers

do white caretakers. Some populations may find

■ Nursing homes

it difficult to publicly admit that a family member

■ Special care units

has AD and may be reluctant to seek help with

caregiving issues. Therefore, programs and services

for caregivers must be culturally appropriate and

sensitive to factors that positively and negatively

influence caregivers’ attitudes and ability to carry

ones, made life easier for them, improved their

out their responsibilities.

caregiving ability, improved the care recipient’s

■ Use of multiple types of support over an

life, and helped them keep their loved one at

extended period of time helps caregivers. For

home.

example, the Resources for Enhancing Alzheimer’s

■ Developing ways to help caregivers become

Caregiver Health (REACH) clinical trial showed

educated about AD, improve flexibility in

that caregivers who received 6 months of inten-

responding to caregiving demands, and learn a

sive help with caregiving strategies had significant variety of practical strategies can help. Studies improvements in overall quality of life. They also

are teaching caregivers how to read the emotional

had lower rates of clinical depression compared to and physical cues of the person with AD and to caregivers who did not participate in the program. understand the sequence of events that often The caregiving strategies included information

leads to inappropriate behaviors. They are also

sharing, instruction, role plays, problem-solving,

helping caregivers respond to the needs of the

skills training, stress-management techniques, and person with AD in a variety of creative ways, telephone support groups. Caregivers reported

such as maintaining flexibility in the face of

that taking part in REACH helped them feel

many demands, becoming educated about the

more confident in working with their loved

disease, learning practical strategies, using available

For Information About AD Support Groups

To find out whether an AD support group is operating in your area, contact:

■ NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center at 1-800-438-4380 or visit www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers

■ Alzheimer’s Association at 1-800-272-3900 or visit www.alz.org ALZHEIMER’S DISEASE Unraveling the Mystery 65

P A R T 4 Improving Support for Families and Other Caregivers resources, involving other family members and

friends, and balancing the needs of the person

with their own needs.

■ Helping caregivers deal with the complicated

issue of whether and when to place a loved one

in a nursing home is an important aspect of

caregiver support. People with dementia are

at much greater risk of nursing home placement

than are other older people of the same age.

Placing a loved one in a nursing home may relieve

some of the burden of caregiving, but it does not

necessarily reduce caregiver stress or emotional

distress. Moreover, nursing home costs now

■ Helping caregivers stay physically active has

average more than $70,000 per year.

big benefits. Researchers have found that regular

One clinical trial tested the effects of an

moderate exercise is an important stress reliever for

enhanced counseling and support program on

caregivers. Exercise helps to reduce blood pressure

nursing home placement and caregiver health.

increases due to stress, improves sleep quality, and

This program for caregivers consisted of six sessions reduces psychological distress and depression.

of individual and family counseling, support

group participation, and on-demand telephone

EARLY-STAGE AD SUPPORT GROUPS:

counseling. Participants in the program were able

A VITAL SOURCE OF HELP

to delay placement of their loved ones in nursing

For families and friends who care for a person with

homes by about 18 months. Researchers attributed AD, talking with others who are going through the the effects of the program to greater tolerance for

same experience can be a vital lifeline. AD support

memory and behavior problems in the person with groups provide a place where caregivers can seek AD, improved satisfaction with the support

respite, express concerns, share experiences, get

provided by family and friends, and fewer

tips, and receive emotional comfort. NIA-funded

symptoms of depression. Moreover, it appears

Alzheimer’s Disease Centers, the Alzheimer’s

that the extra time at home did not come at the

Association, and many other organizations sponsor

expense of the caregivers’ sense of well-being.

in-person and online AD support groups all

around the country.

Improved diagnostic tests and increasing aware-

ness of AD mean that more and more people are

now being diagnosed at early stages of AD. People

66 ALZHEIMER’S DISEASE Unraveling the Mystery

in the early stages often still have good coping

arate groups; in others, people with AD and their

skills and are intensely aware of themselves and

caregivers are together for part of the session and

their symptoms. They also may feel considerable

apart for the remainder.

distress, embarrassment, and isolation because of a

Other types of early-stage support groups are

perceived stigma associated with the disease. As a

less structured. Members discuss topics of their

result, a growing number of people with early-stage own choosing, and the groups meet regularly over AD and their family members are looking for cop- an extended time. Members with AD may stay in ing strategies, meaningful activities, and mental

the group as long as they are able to meaningfully

stimulation. They are eager to educate themselves

take part in the discussion and activities.

about AD, share common experiences, and break

Early-stage support groups are not for everyone.

the potential barriers and isolation caused by their

Some people with early AD and their families may

diagnosis. This has led to the formation of early-

not benefit because of family conflict, denial, cogni-

stage support groups specifically designed to meet

tive impairment, or discomfort with the intimacy

their needs.

of a group experience. However, most participants

Some early-stage support groups follow a

report positive outcomes, such as a greater sense

structured model, with 1- to 2-hour sessions

of control over their lives and feelings that they

scheduled over 6 to 8 weeks. The sessions are

are not alone. Many participants find early-stage

led by a facilitator and discussion topics are

support groups helpful because they instill a spir-

determined in advance. Guest speakers provide

it of camaraderie, build coping skills, and forge

information and help on specific topics such as

relationships and emotional support that continue

legal and financial planning. In some programs,

to help the person with AD and the caregiver even

the person with AD and the caregiver meet in sep- after the sessions end.

What Happens Next?

It is a question many people and their families ask when AD is first diagnosed.

Members of an early-stage support group at the Northwestern University Alzheimer’s Disease Center in Chicago wrote What Happens Next? to help people with early-stage dementia cope with their feelings and the practical aspects of everyday life.

To view the booklet online, visit www.nia.nih.gov/alzheimers/publication/

what-happens-next.

ALZHEIMER’S DISEASE Unraveling the Mystery 67

P A R T 4 Improving Support for Families and Other Caregivers Taking Care of Mom or Dad at a Distance

Taking care of a parent with AD who lives

brothers decided to see whether videoconferencing

hundreds of miles away is a real worry facing

could be a way to keep in touch with her. They in-

many adults. “How can we make sure Mom gets the

stalled a computer with a video camera in her home so

best care possible if we’re not there all the time?”

they could check on her daily, helping fulfill her wish to

“What can I do to help Dad live at home for as long

continue living independently on the family farm while

as possible?”

assuring themselves that she was faring well.

That was the dilemma facing Ken Nixon and his

“We had a need, and we patched the system

two brothers in 2001. Their mother lived in an Arkan-

together at first,” says Ken. “It exceeded our

sas farming community and wanted to stay there. Ken expectations in being able to keep our mother and his brothers lived 3 to 5 hours away—close, but

independent and connected to the family. We could

not close enough.

call and have coffee with her every morning, and it

With funding from NIA, Ken and his brothers

got her day started off right. She had something to

created a multi-purpose, Internet-based system called

look forward to every day—one or two of her boys

AttentiveCare that is currently available to others faced was going to visit.”

with the same long-distance caregiving challenges.

After 6 months of using the home-grown system,

Back in 2001, broadband Internet service had just

Nixon decided to develop it to help other caregivers.

become available in their mother’s community, so the

In 2003, he applied for and received a grant from

NIA to refine the AttentiveCare prototype and test its

feasibility in providing informal, long-distance care to

people with AD.

He later received another grant to evaluate the

software, services, and caregiver usage and benefits

of the system in a variety of caregiving situations. The

participants in this study are distance caregivers of

persons with early- to moderate-stage AD who had

the AttentiveCare system installed in their own homes

and the homes of their family members with AD.

AttentiveCare now features videoconferencing,

multimedia reminders to help care recipients function

independently, and slide shows to keep care recipi-

ents connected with family. The system’s journal and

data logging capability also allows family caregivers

to maintain and share information about the care

Ken Nixon and his grandson use AttentiveCare to

recipient’s health and well-being, whether they are

check in with Ken’s mother.

across the street or thousands of miles away.

68 ALZHEIMER’S DISEASE Unraveling the Mystery

Conclusion

The future builds upon the events and

experiences of the past. That’s certainly true

of AD research. Our knowledge of AD is

advancing rapidly, and we have much to

celebrate in our scientific successes.

At the same time, we cannot forget that AD remains

an urgent problem for our Nation. The challenge is

to continue building on these discoveries so that we

can create a brighter future in which the potential of

successfully managing AD or even preventing this

terrible disease can become a reality.

Glossary

Acetylcholine—a neurotransmitter that plays

Axon—the long extension from a neuron that

an important role in many neurological functions, transmits outgoing signals to other cells.

including learning and memory.

Beta-amyloid—a part of the amyloid precursor

Amygdala—an almond-shaped structure

protein found in plaques, the insoluble deposits

involved in processing and remembering strong

outside neurons.

emotions such as fear. It is part of the limbic

Brain-derived neurotrophic factor

system and located deep inside the brain.

(BDNF)—a growth factor that stimulates survival,

Amyloid plaque—a largely insoluble

growth, and adaptability of some neurons.

deposit found in the space between nerve cells

Brain stem—the portion of the brain that

in the brain. Plaques are made of beta-amyloid,

connects to the spinal cord and controls automatic

other molecules, and different kinds of nerve

body functions, such as breathing, heart rate, and

and non-nerve cells.

blood pressure.

Amyloid precursor protein (APP)—the

Capillary—a tiny blood vessel. The brain has

larger protein from which beta-amyloid is formed. billions of capillaries that carry oxygen, glucose Apolipoprotein E—a protein that carries

(the brain’s principal source of energy), nutrients,

cholesterol in blood and that appears to play some and hormones to brain cells so they can do their role in brain function. The gene that produces this work. Capillaries also carry away carbon dioxide protein comes in several forms, or alleles: ε2, ε3,

and cell waste products.

and ε4. The APOE ε2 allele is relatively rare and

Cerebellum—the part of the brain

may provide some protection against AD (but it

responsible for maintaining the body’s balance

may increase risk of early heart disease). APOE

ε

and coordination.

3 is the most common allele and appears to play

a neutral role in AD. APOE ε4 occurs in about

Cerebral cortex—the outer layer of nerve cells

40 percent of all people with AD who develop

surrounding the cerebral hemispheres.

the disease in later life; it increases the risk of

Cerebral hemispheres—the largest

developing AD.

portion of the brain, composed of billions of

nerve cells in two structures connected by the

corpus callosum. The cerebral hemispheres control

conscious thought, language, decision making,

emotions, movement, and sensory functions.

70 ALZHEIMER’S DISEASE Unraveling the Mystery

Cerebrospinal fluid—the fluid found in

DNA (deoxyribonucleic acid)—a long,

and around the brain and spinal cord. It protects

double-stranded molecule within the nucleus of

these organs by acting like a liquid cushion and

the cell that forms chromosomes and genes.

by providing nutrients.

Early-onset Alzheimer’s disease—a rare

Chromosome—a threadlike structure in

form of AD that usually affects people between

the nucleus of a cell that contains DNA. DNA

ages 30 and 60. It is called familial AD (FAD) if it

sequences make up genes. Most human cells

runs in the family.

have 23 pairs of chromosomes containing

Entorhinal cortex

approximately 30,000 genes.

—an area deep within the

brain where damage from AD often begins.

Clinical trial—a research study involving

Enzyme

humans that rigorously tests safety, side effects,

—a protein that causes or speeds up a

and how well a medication or behavioral

biochemical reaction.

treatment works.

Free radical—a highly reactive molecule

Cognitive functions—all aspects of conscious (typically oxygen or nitrogen) that combines thought and mental activity, including learning,

easily with other molecules because it contains an

perceiving, making decisions,