THE NEUROLOGY HUB
Alzheimer Disease & Dementia > Caregiver Essentials
Top
5 Tips Physicians Can Share with Caregivers of People with Alzheimer Disease
Allan
S. Vann, EdD
When a physician sees a patient with a diagnosis of
Alzheimer disease (AD), they may also interact with the patient’s caregiver.
Caregivers are an essential part of a person with AD’s treatment journey, and
it is therefore critical to equip them with optimal care tools and strategies,
and to help caregivers develop care plans early after diagnosis. In this
article, I have drawn upon my own 10 years of experience as a spouse caregiver
for my late wife, who was diagnosed with early onset AD, to provide physicians
with my top 5 topics to bring up with caregivers of people with AD.
1. Make sure patients know where they are in their
dementia journey and suggest they make plans accordingly.
When a physician makes a diagnosis of AD, it is essential
that a patient and their caregiver understand exactly what that means for their
daily life. You should clarify that, while AD progresses differently for each
patient, one can never be sure how long it will take for significant impacts on
normal activities to occur. Physicians do not need to “unduly frighten” their
patients and caregivers, but they should be honest about the uncertainty
regarding the timeline of transitions.
The unpredictability of cognitive decline became apparent
when my wife and I were making travel plans. At my first AD spouse support
group meeting, I mentioned that my late wife and I loved to travel and had
already placed a deposit on an international trip we had planned to take in 12
months. A wise woman whose husband was in the moderate stage of AD whispered to
me on the way out, “Allan, don’t wait 12 months to take that trip. Your wife
may not be able to travel a year from now.” That night, I asked my wife where
she would like to go if we could only take one more trip. She told me and then
fell asleep, and then I booked that trip. We traveled 3 months later to another
destination and that turned out to be our last major trip. My wife’s cognitive
skills declined so quickly that the following year we were unable to take the
international trip we had planned.
2. Broach the topic of long-term planning and long-term
care options with your patients as early as possible.
There are numerous questions that you can ask caregivers of
patients with AD:
What will you do if you can no longer care for your loved
one by yourself? Can you rely on close family members or friends for support?
Does your loved one prefer to stay at home with companions or health aides, or
does your loved one prefer to be in a residential facility? Which do you
prefer?
If not previously discussed, it is best to have these
conversations as early as possible, ideally before the caregiver’s loved one
has experienced significant cognitive decline. Caregivers need sufficient time
to assess their options, visit potential care facilities, and to consider
employing the help of home health aide providers. It can be especially helpful
to include the person with AD in long-term planning conversations. The earlier
that caregivers consider these options, the more prepared they will be at the
different stages of transition that their loved one experiences. This is
particularly important for the wide range of policies to which each care
provider adheres, such as whether a facility uses a waitlist for admission,
whether meals are provided, or whether a home health aide provider is available
24/7. You can refer caregivers to helpful information available on their
state’s Department of Health website.
As each of these long-term care options carry different
price tags, another aspect of long-term planning is finances. If possible,
recommend that your patients and their caregivers meet with an eldercare
attorney and financial advisor.
When my late wife and I retired, we discussed the
possibility of long-term health care and decided that we did not want such care
to take place in our home. Nine years later, my wife was in the early stages of
AD, and we started visiting various facilities. It gave me some comfort to know
that when I did eventually place my wife in an assisted living facility, it was
the one where she had felt most comfortable during our site visits.
3. Discuss driving safety with patients and their
caregivers.
As patients with AD experience cognitive and functional
decline, they may also lose the ability to drive safely. Unfortunately, it is
not possible for a physician to predict when exactly this may occur. A report
from the American Academy of Neurology (AAN) notes the importance of physicians
talking with patients and caregivers about the risk of driving once there is a
diagnosis of AD or dementia.1 Friends and family members are often
the first to notice any changes in behavior, including driving habits, so physicians
should discuss this topic during every patient visit and document any changes.
At some point, caregivers may need to take the keys away
from their loved one with AD. This is often an extremely difficult and
emotionally straining decision, but it is a decision that must be made in most
cases. My advice is to encourage caregivers to take their loved one’s car keys
away early, before their cognitive ability declines to the point where they get
into an accident and cause injury or property damage, or become lost while
driving and forget how to return home and call for help. These are frightening
scenarios, but very real possibilities.
4. Suggest that caregivers explore caregiver support
groups.
Earlier, I mentioned how a fellow member of an AD spouse
support group meeting helped me to realize the importance of scheduling an
earlier trip with my late wife, rather than wait 12 months for the
international trip we had previously planned. Like me, many caregivers can
benefit from participating in this type of caregiver support group. These
groups provide an environment where caregivers in similar situations can share
helpful tips, recommendations, strategies, or stories about common experiences
and challenges. Additionally, such groups can provide emotional support and
tactics for time management, activities, and advanced care planning.
It is often beneficial for caregivers to identify a group
that matches their specific experience. For example, the group I mentioned was
for partners or spouses of people living with AD. Other groups might be catered
to children caring for their parents or grandparents.
As with everything, it is helpful for physicians to
encourage caregivers to join support groups early in their care journey, as
soon as possible after their loved one is diagnosed with AD. Let caregivers
know that participating in these groups requires a certain level of commitment,
but that they can provide significant benefits including valuable social
interaction that can help the overall physical and mental health of caregivers.
5. Consider recommending adult social day care and other
resources.
Social day care programs can be a relatively low-cost,
win-win option for loved ones in early-to-moderate stages of AD and their
caregivers. These programs provide opportunities for those with AD to engage
socially with others in similar circumstances and to participate in activities
including art, singing, dancing, and games. Caring for a loved one 24/7 can be
extremely stressful, so these social day care programs can provide several
hours of respite for caregivers. Physicians can assist caregivers by making
them aware that these types of programs exist. Consider becoming knowledgeable
about day care options in your geographic area or referring caregivers to local
AD organizations, municipal senior citizen services, adult homes for seniors,
and assisted living facilities that provide social day care services.
Final Thoughts for Physicians
The caregivers of each of your patients have one thing in
common: We are each paddling our boats as hard as we can trying to stay afloat
to support our loved ones. We may be paddling different boats, in different
waters, and at different speeds, but we are all dealing with a similar
situation. We are all trying to keep our heads above water. Your patients and
their caregivers are dealing with this situation for the first time, but as a
physician, you are in a position to provide guidance and suggestions that can
drastically improve the quality of life not only for your patients, but also
for their caregivers. Any advice you can offer, however small, may make a big
difference in the lives of your patients and their caregivers.
1.
Iverson DJ, Gronseth GS, Classen S, Dubinsky RM,
Rizzo M. Practice parameter update: evaluation and management of driving risk
in dementia. Neurology. 2010;74(16):1316-1324. doi:
10.1212/WNL.0b013e3181da3b0f
Published online only on July 23, 2024 on The Neurology Hub website. The Neurology Hub is a site “designed for health care professionals to learn, collaborate, and share content and ideas in the field of neurology” and is sponsored by the journal, Practical Neurology.
This article can be accessed at: https://theneurologyhub.com/article/top-5-tips-physicians-can-share-with-caregivers-of-people-with-alzheimer-disease
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.