Considering Home Care?
Since there is no clear demarcation as to when persons
with early stage dementia enter the middle or moderate
stage, it is often difficult to know when to add a home
care worker to the household. Even a very small number
of hours of home care represents a change to which all
members of the household must adjust. It is sometimes
difficult to anticipate just how challenging an adjustment
this can be, both for the person entering middle
stage and for the “well” family members. For the person
entering middle stage, this is often seen as an admission
that he or she can no longer do everything for him or
herself. Having the assistance of a home care worker is
experienced as humiliating and as something to resist or
refuse. For the “well” family members, the addition of
the home care worker to the household is often seen as
an invasion of privacy and as a defeat since their family,
cultural and religious values may dictate that they “take
care of their own.”
Just as with other decisions related to the care of a family
member with dementia, waiting too long to consider
and plan for appropriate home care is an understandable
liability. With some family members, it is just too painful
to imagine the future needs of the person with dementia.
Others have tried to arrange for home care, only to find
that the expense of the home care and the challenge of
finding the right person for the job are much greater
than they had anticipated.
How, you might ask, is it possible to overcome what can
feel like insurmountable challenges to taking the steps
necessary to putting home care in place? What follows
are some of the things to think about as you resist the
temptation to give up too soon.
First, keep the dialogue about the care planning within
the family as open as possible. The more family consensus
there is about the kind of care and the means of
payment for the care, the more likely you will be to get
care in place by the time it is needed.
Second, start as
early as possible to
introduce as many
extended family members into the informal care plan
for the person with dementia. These neighbors, members
of the family’s religious community and/or paid
caregivers who are providing a limited number of home
care hours are all important in reducing the isolation
that can so easily occur. The informal network can be
empowering as a source of potential home care providers
and as a means of keeping the person with dementia
appropriately stimulated.
Third, view yourself as essential to the process of making
a home care arrangement work. This is particularly
important in selecting a home care worker and in determining
how the home care worker will get introduced
to the person with dementia. Be sensitive to the initial
response of the person with dementia to the home care
worker, but don’t give up too easily if it doesn’t come
together right away. The person with dementia needs
to feel that he or she is still in control and still able to
function at the highest possible level. The home care
worker is entering the world of the person with
dementia; and needs to be seen as a friend who can
assist, not as someone who is there to take over.
Finally, be creative in how you utilize the health care
professionals who are involved with the person with
dementia. A “prescription” for home care from the doctor
or nurse practitioner can contribute to the person
with dementia being more accepting of the home care
worker as part of the medical team. The care consultants
at the Alzheimer’s Association are available in person and
by phone to assist in putting a home care plan in place.
Don’t hesitate to contact us.
For information and support, please call the Helpline day or night at
800.272.3900 or send us an e-mail at helpline@alznyc.org.
— Reva Hoffman,
Director of Clinical Services
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