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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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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. |
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| 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:
 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?
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 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.
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.
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Taking
Care of Mom or Dad at a Distance
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| Ken Nixon and his grandson use
AttentiveCare to check in with Ken’s mother. |
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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.
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