NOTHING FOR ME WITHOUT ME: CAREGIVER TRAINING NEEDS

Abstract

Over 34 million informal caregivers provide care to an adult aged 50 or older with over 15 million caregivers caring for a person with dementia. People often become caregivers unexpectedly. For most caregivers little training is available, and most skills are learned “on the job”. The objective of this study is to determine the training needs of caregivers. An anonymous survey was conducted at two caregiver conferences. Caregivers were asked to name up to 5 training needs. For this abstract we report the percent of responses by caregivers. Seventy-nine caregivers completed the survey. Seventy-seven percent (77%) of the caregivers cared for a person over age 50. Increased knowledge of health issues (17%) and resources (17%) were the highest responses. Training in physical caregiving skills i.e. bathing (10%), transfers (8%) and diaper changes (4%) were voiced as important. Training for improving personal interactions with the care recipient was important (9%) as well as how to practice patience, kindness and compassion (7%). Two areas where training is available but perhaps not accessible – caregiver support (9%) and care recipient behaviors (8%) were all important to caregivers. Healthy eating (9%) and stopping or limiting driving by the care recipient (2%) were enunciated as areas requiring training. Many of the training needs should be addressed by healthcare professionals in their interactions with caregivers and care recipients. Programs are available online, but caregivers are not accessing this training. To improve outcomes for both caregivers and care recipients targeted training for caregivers is needed.

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GSA 2019 Annual Scientific Meeting
severity; and CR depressive symptom severity. CR diagnostic
groups: Depression Only (n=49); Dementia Only (n=61);
Depression and Dementia Only (n=47); Delirium Plus (n=54).
Depressive symptom severity was measured using the Center
for Epidemiologic Studies Depression Scale; CR cognitive
symptom severity was measured using the Telephone Interview
for Cognitive Status. Among CR, 57% were female, mean/sd
age=77/6.9, 93% White; among caregivers, 64% were female,
mean/sd age=66/13.7, 91% White, 55% spouses, 25% daugh-
ters, 9% sons. In multivariate linear regression models, which
included covariates caregiver gender, relationship to CR, and
number of hours/week providing care, we found that caregiver
depressive symptom severity was less severe among caregivers
of CR with Dementia Only compared to CR with Depression
Only (b=-3.32; p=0.06); not associated with CR cognitive
symptom severity; and signicantly associated with CR de-
pressive symptom severity (b=0.14; p<0.01). We conclude
that family members of older adults with depression deserve
greater attention to address their own depressive symptoms.
FACTORS ASSOCIATED WITH UNMET NEED AMONG
FAMILY CAREGIVERS
JoanneR. Campione1 and Katarzyna Zebrak2, 1. Westat,
Durham, North Carolina, United States, 2. Westat,
Rockville, Maryland, United States
This study investigates the relationship between care-
giver demographics, caregiving intensity, caregiver support
use, and aspects of the caregiving situation with perceived
unmet need. The data source was survey response data
from 1,558 informal caregivers caring for older adults
(age 60+) or caring for any adult with Alzheimer’s disease
or related dementia (ADRD). Participants were randomly
recruited through U.S. Area Agencies on Aging client
lists of any service and interviewed in December 2016.
Caregivers were asked, “Are you receiving all the help you
need?” Twenty-two percent (n=345) said “Denitely No”
and were classied as having unmet need. We placed care-
givers in tertiles based on their Zarit burden score; unmet
need was 14% among low burden, 20% among medium,
and 34% among high. The mean age of the care recipient
(CR) was 81 years. Caregivers were 70% non-Hispanic
White, 52% caring for CR with ADRD, and 43% spouse
of CR. Amultivariable logistic regression found two pre-
dictive factors (odds ratio p-value < 0.01) that increased
the likelihood of reporting unmet need: daily intensity of
caregiving and not feeling appreciated by CR. Usage of
caregiver education, counseling or support group services
in the past 6months decreased the likelihood of reporting
unmet need. In the high burden subgroup, Black caregivers
were more likely to report unmet need than White care-
givers. Understanding the relationship between caregiver
demographics, self-reported burden level, service use, and
the caregiver’s need for more help can assist caregiver sup-
port programs in assessing, measuring, and addressing the
ongoing needs of caregivers.
MOVING TOWARD BEST PRACTICES IN STATE
APPROACHES TO SUPPORTING FAMILY
CAREGIVERS OF OLDER ADULTS
Julia Burgdorf,1 Jennifer Aull,2 and JenniferL. Wolff3,
1. Johns Hopkins Bloomberg School of Public Health,
Baltimore, Maryland, United States, 2. Johns Hopkins
University Bloomberg School of Public Health, Baltimore,
Maryland, United States, 3. Johns Hopkins University,
Maryland, United States
In January 2018, Congress passed the Recognize, Assist,
Include, Support, and Engage (RAISE) Family Caregivers Act
to establish a national strategy to acknowledge and assist
family caregivers. The success of such an effort will be con-
tingent on knowledge and dissemination of best practices. We
conducted a policy project funded by the Milbank Memorial
Fund that proles ve geographically and politically diverse
states that have pursued novel approaches to supporting
family and unpaid caregivers of older adults. We discuss nd-
ings from national and state reports, state aging plans, and
interviews with 26 key informants. We nd that each state
(Hawaii, Maine, Minnesota, Tennessee, Washington) sought
to strengthen supports for family caregivers as an element of
broader community-based long-term services and supports
strategies. Supports for family caregivers included nancial
support for working caregivers, caregiver assessment and
care planning, and expanded access to respite care: several
states included these services within programs targeted to
persons at high risk of institutionalization or Medicaid-entry.
Key informants noted the importance of tailoring programs
to suit each state’s unique demographic, geographic, and ser-
vice delivery context, and reported that individual stories,
advocacy, and data were critical to placing family caregiving
on legislative policy agendas. State leaders highlighted the
pivotal role of state aging networks in efforts to supporting
caregivers, given these entities’ deep knowledge of local
community needs and challenges and established relation-
ships with local service providers. Meaningful change often
required a long-term commitment and sustained incremen-
talism, typically by innovating on a smaller scale before ex-
panding statewide.
NOTHING FOR ME WITHOUT ME: CAREGIVER
TRAINING NEEDS
Jeananne Elkins,1 and Phillip Rustin1, 1. Brenau University,
Gainesville, Georgia, United States
Over 34 million informal caregivers provide care to an
adult aged 50 or older with over 15 million caregivers caring
for a person with dementia. People often become caregivers
unexpectedly. For most caregivers little training is available,
and most skills are learned “on the job”. The objective of this
study is to determine the training needs of caregivers. An an-
onymous survey was conducted at two caregiver conferences.
Caregivers were asked to name up to 5 training needs. For
this abstract we report the percent of responses by caregivers.
Seventy-nine caregivers completed the survey. Seventy-seven
percent (77%) of the caregivers cared for a person over age
50. Increased knowledge of health issues (17%) and re-
sources (17%) were the highest responses. Training in phys-
ical caregiving skills i.e. bathing (10%), transfers (8%) and
diaper changes (4%) were voiced as important. Training for
improving personal interactions with the care recipient was
important (9%) as well as how to practice patience, kindness
and compassion (7%). Two areas where training is available
but perhaps not accessible – caregiver support (9%) and care
recipient behaviors (8%) were all important to caregivers.
Healthy eating (9%) and stopping or limiting driving by
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GSA 2019 Annual Scientific Meeting
the care recipient (2%) were enunciated as areas requiring
training. Many of the training needs should be addressed by
healthcare professionals in their interactions with caregivers
and care recipients. Programs are available online, but care-
givers are not accessing this training. To improve outcomes
for both caregivers and care recipients targeted training for
caregivers is needed.
PUBLIC HEALTH AND SOCIAL SERVICES SYSTEM:
THE DISENCHANTMENT OF ISOLATED SENIOR
CAREGIVERS
Melanie Couture,1 Pam Orzeck,2 and
Apostolia Petropoulos3, 1. Centre for research and expertise
in social gerontology, CIUSSS West-Central Montreal,
Montreal, Quebec, Canada, 2. McGill University, Montreal,
Quebec, Canada, 3. Jewish Eldercare Centre, Montreal,
Quebec, Canada
Social isolation is one of the negative consequences asso-
ciated with caregiving and is experienced by approximately
20% of Canadian family caregivers. Being in a public health
and social services system, Canadian caregivers should nor-
mally turn to their local community service centres (CLSC)
to access formal services and feel less isolated. However,
studies have shown that satisfaction is low regarding acces-
sibility and continuity of formal support services. In an effort
to develop interventions that meet the needs of isolated senior
caregivers, the purpose of this exploratory descriptive qualita-
tive study was to identify challenges encountered in accessing
and utilizing formal supports within the public health and so-
cial services system in Canada. Nineteen isolated senior care-
givers participated in seven focus groups. Data analysis was
performed using the Miles, Huberman, and Saldana (2014)
approach. Results showed that isolated caregivers do not
know where to get information about existing services within
the formal system. Once services are found, waiting lists are
linked to unbearable delays. Some caregivers are actually re-
directed to private services, if they can afford it. Isolated care-
givers also criticize the unpredictability of the system as they
face relentless changes of care providers, inadequate services
and sometimes unwarranted cancellations or terminations. In
addition, they nd formal services lacking human sensitivity.
Many of them come to the conclusion that formal services
are not worthwhile and exclude themselves from the formal
system. This research demonstrated that the health and social
services system can actually contribute to the social isolation
of senior caregivers longing for support.
SESSION 2050 (SYMPOSIUM)
FROM BIG DATA TO COMMUNITY SETTINGS: HOW
CAN EXERCISE IMPROVE HEALTH OUTCOMES IN
OLDER CANCER SURVIVORS?
Chair: ShirleyM. Bluethmann, The Pennsylvania State
University College of Medicine, Hershey, Pennsylvania,
United States
Discussant: Corinne Leach, American Cancer Society,
Atlanta, Georgia, United States
Current guidelines recommend that survivors achieve
regular physical activity and reduced inactivity to attenuate
cancer and mortality risk and to promote quality of life.
Optimal ways of obtaining physical activity or measuring
how much exercise has been achieved continues to be a
challenge, especially among older adults and cancer sur-
vivors. Our symposium will provide insights using big data
to understand population level patterns of activity and po-
tential benets for survivors, examining implications for
survival and key health outcomes, including multimorbidity
and functional limitations. We will also discuss social and
environmental determinants that may be important for older
survivors in designing community interventions, especially in
rural communities. These include considerations related to
the built environment and social support to promote leisure-
time physical activity in older survivors.
PHYSICAL ACTIVITY AND SEDENTARY BEHAVIORS:
IMPACT ON SELF-RATED HEALTH AND PHYSICAL
OUTCOMES IN CANCER SURVIVORS
ShirleyM. Bluethmann,1 Eileen Flores,2
Charles Matthews,3 and Frank Perna3, 1. The Pennsylvania
State University College of Medicine, Hershey, Pennsylvania,
United States, 2. Penn State College of Medicine, Hershey,
Pennsylvania, United States, 3. National Cancer Institute,
Rockville, Maryland, United States
Physical activity (PA) and avoidance of inactivity are re-
commended in cancer survivorship. But survivors are not
meeting these recommendations. We used national data
(NHANES) collected 2011-2014 (n=9620) to estimate asso-
ciations of PA and TV viewing with 3 health outcomes: self-
rated health, functional limitations and multimorbidity in
older cancer survivors and adults without cancer. Greater PA
was associated with reporting excellent health in survivors.
Survivors that obtained 22.5+ MET-hours/week were 5.5
times more likely to report excellent health than those that
did no exercise (OR=5.5, p<.001). We observed a decrease
in likelihood of multimorbidity and functional limitations
with increasing PA (both signicant at p<.001). We noted
survivors that abstained from watching TV were 3x more
likely to report excellent health and between 60-80% less
likely to report functional limitations and multimorbidity
than TV watchers (p<001). Findings with non-cancer adults
were similar. Survivors need PA and reduced TV to maximize
health outcomes.
SELF-REPORTED WALKING PACE AND ALL-CAUSE
MORTALITY AMONG CANCER SURVIVORS IN THE
NIH-AARP DIET AND HEALTH STUDY
Elizabeth Salerno,1 PedroSaint Maurice,1 Erik Willis,1
Loretta DiPietro,2 and Charles Matthews1, 1. National
Cancer Institute, Rockville, Maryland, United States, 2.
George Washington University, Washington, District of
Columbia, United States
We examined the association between self-reported
walking pace and all-cause mortality among cancer survivors
in the NIH-AARP Diet and Health Study. Participants in-
cluded 30,110 adults (Mage=62.4+/-5.14 years) diagnosed
with cancer between study enrollment and follow-up, when
they self-reported walking pace. Individuals were followed
until death or administrative censoring in 2011. We esti-
mated the hazards ratios (HR) and 95% condence inter-
vals (CI) for walking pace and all-cause mortality adjusting
for age, sex, race, BMI, health status, physical activity and
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