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MENTAL HEALTH
CHALLENGES

Family caregivers are the most
important resource for their loved
one living with dementia. These
caregivers are particularly im-
pacted by the disease, not only re-
lated to the emotional impact of
the diagnosis, but also by their
role in providing care. Compared
with family caregivers of persons
without dementia, they are more
likely to take on multiple respon-
sibilities including assisting with
activities of daily living, coordi-
nating health care services, and
managing finances as well as other
instrumental activities of daily liv-
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ing. In Texas, the number of in-
dividuals providing unpaid care
for persons with Alzheimer’s dis-
ease grew from 690,058 in 2005
to over 1.4 million in 2018. These
caregivers provided an estimated
1.6 billion hours of care, valued at $20.5 billion. Although some preciated how hard it was for families to find good quality home
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caregivers report positive benefits associated with the caregiving health care in this community until I had to do it myself. And I
role, such as a closer relationship with the recipient of care or an thought I knew how to do it and it was a nightmare.”), and the lack
opportunity to assist others, there is an extensive body of evidence of guidance for planning for the future (“I didn’t get hospice in
showing negative consequences. The physical and emotional health early enough – didn’t know to look at this – it was a god-send when
effects experienced by family caregivers led to approximately $11.7 it happened.”). Caregivers without support are much more likely to
billion in higher health care costs for caregivers vs. non-caregivers experience negative outcomes and prematurely institutionalize their
nationally in 2018, including $903 million in higher health care costs family member.
in Texas. There are 5.8 million Americas diagnosed with
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Alzheimer’s disease. As the proportion of U.S. population age 65 The Caring for the Caregiver program, School of
and older continues to increase, the number of Americans with Nursing, UT Health San Antonio
Alzheimer’s or other dementias will escalate rapidly. The Caring for the Caregiver program supports family caregivers
There is a pressing need to implement programs of support for of people living with dementia through a model of education, re-
families caring for their members with dementia. Our current sys- search, and community engagement. As such, the program strives
tems of support for caregivers, particularly those who are caring for to support family caregivers in five key ways: preparing the caregiver
persons living with dementia, are limited and fragmented, with few to take on the caregiving role, offering anticipatory guidance, pro-
evidence-based interventions translated into routine clinical care, viding the caregiver with information to make plans as the disease
thus remaining inaccessible to the majority of family caregivers. progresses, recommending strategies to cope with care challenges,
Specifically, caregivers in San Antonio have described the limited and supporting opportunities for socialization with their loved one
information they received at the time of diagnosis (“He was diag- with dementia. Family caregivers have participated in all stages of
nosed…. We were not really told anything. He had a memory prob- planning and implementing the program through their membership
lem. And you’re just kind of thrown out there. “Now, go figure it on our community advisory board.
out.”), the difficulty they have in accessing resources (“I never ap- Family caregivers describe the need for information about the di-
continued on page 24
visit us at www.bcms.org 23