2003 ASSESSMENT of
CAREGIVER SERVICE GAPS
EXECUTIVE SUMMARY
March, 2003
Western Illinois Area Agency on Aging (WIAAA), located in Rock
Island, Illinois serves a ten-county area in western Illinois. The planning and
service area (PSA 03) includes Bureau, Henderson, Henry, Knox, LaSalle,
McDonough, Mercer, Putnam, Rock Island and Warren Counties.
The reauthorized Older Americans Act includes the National
Family Caregiver Support Program, which provides funding for a number of
services to assist caregivers of individuals over the age of 60, as well as
grandparents and other relative caregivers over the age of 60 who are raising
grandchildren age 18 or under. WIAAA began implementing caregiver’s services
for these groups in fiscal 2001. This assessment was conducted to determine
whether the range of services funded and provided met the needs of the
identified groups and whether or not additional services were needed. In other
words, are there services needed by older caregivers that are not currently
available?
Lynn Prosser-Volker is an intern in the Masters in Gerontology
Program of Western Illinois University. She has had previous experience in
managing senior retirement housing and assisted living. Lorna Taraki is the
WIAAA Planner. She has a B.S. in Human Development and Family Studies from the
University of Illinois and has had fifteen years of experience in the aging
network in a nursing home, home health care agency and the Area Agency on Aging.
Lynn Prosser-Volker, in consultation with the staff of WIAAA,
developed a survey to determine usage and satisfaction of caregivers age 60 and
over with the services available to them. Participants were selected randomly
from client databases of funded providers. 214 participants were identified to
take part in this survey. 88 participants took part in telephone interviews.
Lorna Taraki, in consultation with other staff of WIAAA,
developed different questionnaires for each type of provider of caregiver
services to determine what gaps in service they have observed. Some questions
were included to obtain general program evaluation information as well.
WIAAA realizes the study and resulting assessment are not
statistically reliable. The information is, never the less, informative for
further development of caregiver services
Of the 88 respondents to telephone interviews, 42% cared for
spouses, and 39% for parents. Over one-third of the care recipients needed help
with Activities of Daily Living. Stress levels averaged 5 on a scale of 1-10.
24% attended support groups and 10% received counseling. 24% said they would
attend training if it is available.
Adult Day Care provided the most respite, and family members
second. More respite is wanted, especially evenings, weekends, and overnight, in
the home. The services used most were case management, homemaker, home health
and home delivered meals.
57% of caregivers transported the person they care for, but 18
caregivers reported problems with transferring and three reported problems with
transferring a wheelchair.
Several caregivers would welcome an agency or provider-specific
newsletter. They commented on the lack of caregiver education or information
given by the medical community – physicians and discharge planners – on
services available as well as what to expect from the care recipient’s
condition. Western Illinois Area Agency on Aging has just received a small grant
from the National Association of Area Agencies on Aging (N4A) called
"Making the Link," which will enable us to begin educating physicians
about caregiving services available. Most caregivers attended church or
religious activities which may be an avenue to create awareness of services
available as well.
The extensive caregiving collection in our gerontological
library had information available to meet all 201 requests received, except for
information on winter driving and Parkinson’s disease. Requests were for
materials on stress, guilt, time management, nutrition, actual care, behavioral
problems and specific diseases.
Our Caregiver Resource Centers had nearly 700 requests for
information and only a few for services that were not available. The largest
category requested but not met was for services that are available in our PSA
but not in the area where the caregiver lived. 58 requests were from long
distance caregivers. Miscellaneous requests that could not be met were for door
alarms, health care equipment loans and reimbursement to the caregiver by the
state. In addition, one working caregiver needed help on a daily basis with
assisting a care recipient who suffers from dementia.
There is demand for support groups where none are available.
Some caregivers found they were held at an inconvenient time, were unable to
leave the care recipient, or had no respite available at the appropriate time.
Gaps in service reported by those attending support groups included:
- Adult Day Care where none was available
- Transportation to medical appointments, at night, and in rural areas
- Home Delivered Meals in rural areas and special diets as prescribed by
doctors
- Respite in-home on evenings, weekends, or overnight
- Financial assistance
- Emotional and family support
The Case Coordination Unit’s five regional offices reported
that only one region was always able to provide the respite requested. Sixty
five caregivers who needed adult day care respite lived in areas where the
service was not available, and institutional respite facilities were unavailable
to 15 caregivers who needed them. The institutional respite was often refused,
possibly because of reluctance of the care recipient to go to a nursing home for
fear that he/she would not be allowed to leave again, or possibly reluctance of
the caregiver to leave the care recipient with strangers.
Supplemental services requested that could not be met were for
lift chairs, ramps when the home is not owned and home repairs. This
service met many needs. The majority of referrals came from Community Focal
Point/Caregiver Resource Centers and case management. 137 caregivers and/or care
recipients received Community Care Program services which were either homemakers
or adult day care services on a regular basis. By contrast, of the 88 caregivers
interviewed, only seven used adult day care respite and nine used in-home
respite.
Training was provided to 90 participants in four different
programs by the Central Illinois Chapter of the Alzheimer’s Association. The
topics of greatest interest were: overview of dementia and Alzheimer’s
disease, stress management, and behavior and communication techniques.
The Robert Young Center Memory Clinic reported that clients were
reluctant to have one-on-one counseling. They were more willing to take
advantage of phone conversation counseling. Gaps in service expressed by
caregivers at the Memory Clinic included: transportation problems, lack of
flexibility in homemaker use, on the part of both the provider and the client,
and difficulty in arranging emergency respite.
Questionnaires were completed by 16 grandparents raising
grandchildren who attended two support groups. The major "problems"
expressed by many grandparents raising grandchildren were how to change laws to
protect children from unfit parents and how to change attitudes towards
grandparents raising grandchildren. When asked to rank needs, financial issues
were first, then training on behavioral, legal, school, health insurance, and
housing issues in that order. The support group leaders felt a need for free
speakers, possibly regular and affordable respite, and more training. Two
requests for respite and seven supplemental requests were received and met.
Outcomes for Caregivers
We understand that in-home companion respite services
including evening, weekend days, or overnight on an occasional basis when there
is a specific and urgent need are being provided by at least one agency .
Respite service being made available to individual caregivers on a regular basis
to enable them to attend support groups might increase support groups
attendance. For those who are able to bring the care recipient, a group respite
service, as is offered by at least one of our support groups, would be useful.
If funding and staffing would be available, more caregivers
could be included if there was a second support group in the opposite end of
each county so that the distance would not be too great for some caregivers.
WIAAA should continue to advocate for increases in funding to
enable our providers to expand transportation and home delivered meals to the
more remote rural areas that are more costly to serve.
Caregivers who have Internet access have expressed an interest
in email newsletters and updates can be referred to newsletters that are already
online, such as www.caregiver.com
and www.nfcacares.org.
Western Illinois Area Agency on Aging may consider adding a Question and Answer
section for caregivers on their web site.
Many caregivers expressed willingness to pay a deposit on video
tapes borrowed from the ELLF caregiver library collection. If this policy were
put in place it would increase the frequency of lending of those tapes since it
would increase the likelihood of returns.
The report on interviews with caregivers indicated a need for
innovative marketing to make contact with more caregivers and increase public
awareness. One way to do this would be to make a video explaining the programs
and services available to caregivers and the care recipients. This could be
loaned to caregivers unable to attend support groups. Many of the caregivers
said they attend church or religious organizations. Public awareness might be
increased if presentations were given to women’s groups, i.e. smaller men’s
and women’s groups within the religious community, pastors groups, or
providing brief information to be included in church newsletters. The caregivers
also commented on the lack of information given them by the medical community,
doctors and discharge planners. Western Illinois Area Agency on Aging has just
received a small grant from the National Association of Area Agencies on Aging
(N4A) called "Making the Link," which will enable us to begin
educating physicians about caregiving services available.
Other unmet needs fall into the category of things about which
we can do nothing, or very little. These include; the need for more adult day
care facilities, nursing homes and assisted living facilities able to provide
respite; evening transportation; physician-prescribed special diets; home
repairs; family support and financial assistance.
Outcomes for Grandparents Raising Grandchildren
In summary, the support groups could use assistance in getting
speakers from Prairie State Legal Assistance, the Department on Aging, the
Department of Human Services and the Area Agency on Aging. Participants change
over a period of time, so the AAA may need to speak about available services
once or twice a year. Training in coping with drugs, alcohol, sex, gangs, and
eating disorders could be provided by appropriate social service agencies. The
University of Illinois Extension Service has made significant contributions to
the support group meetings.
The AAA and Community Focal Points must continue to strive for
creation of additional support groups. The time and place must be considered for
the greatest convenience of the grandparents raising grandchildren. Support
groups may even need to be redefined and/or renamed. (Grandparents Club,
Grandparents Fellowship, Grandparents Discussion Group, etc.) One is named
"Grandparents are Great" which is a positive image. They might focus
on social events and/or speakers, and let the mutual support just happen as a
by-product.
A copy of the full report is available from the area agency.
Contact Lorna Taraki
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