Alzheimer's Disease: Unraveling the Mystery - 6 Improving support for families and caregivers

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One of the greatest costs of AD can be the physical and emotional toll on family members, caregivers, and friends of people with the disease. The changes in a loved one's personality and mental abilities; the need to provide constant, loving attention for years on end; and the demands of bathing, dressing, and other caregiving duties in the later stages of the disease can be hard to bear. Many caregivers must assume new and unfamiliar roles in the family, and these changes can be both difficult and sad. Not surprisingly, caregivers of people with dementia spend significantly more time on caregiving tasks than do caregivers of people with other types of illnesses.

One of the hardest decisions that many families face is whether and when to place a loved one with AD in a nursing home or other type of care facility. Once this decision is made, families must decide what type of care is best for the person and the family. Many investigators are working to identify strategies that can lead to improved quality of care in various facilities, including adult day care centers, assisted living facilities, continuing care retirement communities, nursing homes, and special care units (separate areas within nursing homes or assisted living facilities designed especially for people with dementia).

Who Are AD Family Caregivers?

Many primary caregivers are family members, and NIA-funded research has shown that the value of informal family caregiving of people with cognitive impairment adds up to billions of dollars every year. Who are these family caregivers?

Spouses: This is the largest group of caregivers. Most are older, too, and many have their own health problems.
Daughters: The second largest group of primary caregivers is daughters. Many are married and raising children of their own. Juggling two sets of responsibilities is often tough for these members of the “sandwich generation.”
Daughters-in-law: Many women in this group help take care of an older person with AD. They are the third largest group of family caregivers.
Sons: Although many are involved in the daily care of a parent with AD, sons often focus on the financial, legal, and business aspects of caregiving.
Brothers and sisters: Siblings may assume primary responsibility for care if they live close by. Many of these caregivers also are older and may be coping with their own frailties or health problems.
Grandchildren: Older children may become major helpers in caring for a grandparent with AD. Grandchildren may need extra support if their parents’ attention is heavily focused on the ill grand-parent or if the grandparent with AD lives in the family’s home.


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, including:

* A new sense of purpose or meaning in life
* Fulfillment of a lifelong commitment to a spouse
* An opportunity to give back to a parent some of what the parent has given to them
* Renewal of religious faith
* Closer ties with people through new relationships or stronger existing relationships


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Where Are People with Alzheimer’s Disease Cared For?

* Home
* Assisted living facilities (those in the early stages)
* Adult day care centers
* Nursing homes
* Special care units
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AD caregivers do not all have the same psychological and physical response to caregiving. For example, caregivers who have strong support systems and well-developed coping skills may be able to weather the stresses of caring for a loved one with AD. Others who have few breaks from caregiving responsibilities and/or have preexisting illnesses may be more vulnerable to the physical 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 services and information geared to different stages of the disease.

* Traditions and attitudes about caregiving vary across cultural groups. For example, some researchers have found that African-American caregivers use fewer formal in-home services than do white caretakers. Some populations may find it difficult to publicly admit that a family member 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 out their responsibilities.

* Use of multiple types of support over an extended period of time helps caregivers. For example, the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) clinical trial showed that caregivers who received 6 months of intensive help with caregiving strategies had significant improvements in overall quality of life. They also had lower rates of clinical depression compared to caregivers who did not participate in the program. The caregiving strategies included information sharing, instruction, role plays, problem-solving, skills training, stress-management techniques, and telephone support groups. Caregivers reported that taking part in REACH helped them feel more confident in working with their loved ones, made life easier for them, improved their caregiving ability, improved the care recipient’s life, and helped them keep their loved one at home.

* Developing ways to help caregivers become educated about AD, improve flexibility in responding to caregiving demands, and learn a variety of practical strategies can help. Studies are teaching caregivers how to read the emotional and physical cues of the person with AD and to understand the sequence of events that often leads to inappropriate behaviors. They are also helping caregivers respond to the needs of the person with AD in a variety of creative ways, such as maintaining flexibility in the face of many demands, becoming educated about the disease, learning practical strategies, using available 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 average more than $70,000 per year.

One clinical trial tested the effects of an enhanced counseling and support program on nursing home placement and caregiver health. This program for caregivers consisted of six sessions of individual and family counseling, support group participation, and on-demand telephone counseling. Participants in the program were able to delay placement of their loved ones in nursing homes by about 18 months. Researchers attributed the effects of the program to greater tolerance for memory and behavior problems in the person with AD, improved satisfaction with the support provided by family and friends, and fewer symptoms of depression. Moreover, it appears that the extra time at home did not come at the expense of the caregivers’ sense of well-being.

* Helping caregivers stay physically active has big benefits. Researchers have found that regular moderate exercise is an important stress reliever for caregivers. Exercise helps to reduce blood pressure increases due to stress, improves sleep quality, and reduces psychological distress and depression.


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 800-438-4380 or visit www.nia.nih.gov/Alzheimers/
ResearchInformation/ResearchCenters
* Alzheimer’s Association at 800-272-3900 or visit www.alz.org



Early-stage AD support groups: a vital source of help

For families and friends who care for a person with AD, talking with others who are going through the same experience can be a vital lifeline. AD support groups provide a place where caregivers can seek respite, express concerns, share experiences, get tips, and receive emotional comfort. NIA-funded Alzheimer’s Disease Centers, the Alzheimer’s Association, and many other organizations sponsor in-person and online AD support groups all around the country.

Improved diagnostic tests and increasing awareness of AD mean that more and more people are now being diagnosed at early stages of AD. People in the early stages often still have good coping skills and are intensely aware of themselves and their symptoms. They also may feel considerable distress, embarrassment, and isolation because of a perceived stigma associated with the disease. As a result, a growing number of people with early-stage AD and their family members are looking for coping strategies, meaningful activities, and mental stimulation. They are eager to educate themselves about AD, share common experiences, and break the potential barriers and isolation caused by their diagnosis. This has led to the formation of early-stage support groups specifically designed to meet their needs.


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What Happens Next?

Cover of the What Happens Next? publicationIt 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.

For a free copy, call the Alzheimer’s Disease Education and Referral (ADEAR) Center at 800-438-4380 or visit www.nia.nih.gov/Alzheimers/Publications/WhatHappensNext.htm.
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Some early-stage support groups follow a structured model, with 1- to 2-hour sessions scheduled over 6 to 8 weeks. The sessions are led by a facilitator and discussion topics are determined in advance. Guest speakers provide information and help on specific topics such as legal and financial planning. In some programs, the person with AD and the caregiver meet in separate groups; in others, people with AD and their caregivers are together for part of the session and apart for the remainder.

Other types of early-stage support groups are less structured. Members discuss topics of their own choosing, and the groups meet regularly over an extended time. Members with AD may stay in the group as long as they are able to meaningfully take part in the discussion and activities.

Early-stage support groups are not for everyone. Some people with early AD and their families may not benefit because of family conflict, denial, cognitive impairment, or discomfort with the intimacy of a group experience. However, most participants report positive outcomes, such as a greater sense of control over their lives and feelings that they are not alone. Many participants find early-stage support groups helpful because they instill a spirit of camaraderie, build coping skills, and forge relationships and emotional support that continue to help the person with AD and the caregiver even after the sessions end.



Taking Care of Mom or Dad at a Distance

Taking care of a parent with AD who lives hundreds of miles away is a real worry facing many adults. “How can we make sure Mom gets the best care possible if we’re not there all the time?” “What can I do to help Dad live at home for as long as possible?”

That was the dilemma facing Ken Nixon and his two brothers in 2001. Their mother lived in an Arkansas farming community and wanted to stay there. Ken and his brothers lived 3 to 5 hours away—close, but not close enough.

With funding from NIA, Ken and his brothers created a multi-purpose, Internet-based system called AttentiveCare that is currently available to others faced with the same long-distance caregiving challenges. Back in 2001, broadband Internet service had just become available in their mother’s community, so the brothers decided to see whether videoconferencing could be a way to keep in touch with her. They installed a computer with a video camera in her home so they could check on her daily, helping fulfill her wish to continue living independently on the family farm while assuring themselves that she was faring well.

“We had a need, and we patched the system together at first,” says Ken. “It exceeded our expectations in being able to keep our mother independent and connected to the family. We could call and have coffee with her every morning, and it got her day started off right. She had something to look forward to every day—one or two of her boys was going to visit.”

After 6 months of using the home-grown system, Nixon decided to develop it to help other caregivers. 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 recipients connected with family. The system’s journal and data logging capability also allows family caregivers to maintain and share information about the care recipient’s health and well-being, whether they are across the street or thousands of miles away.