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We are pleased to offer the final
of four installments of the Family
Caregiver Guide (FCG), which is
made possible by a generous grant
from Forest Laboratories, Inc.
with additional support from the
Rowland & Sylvia Schaefer Family
Foundation, Inc. The goals of
the FCG are to provide caregivers
unable to attend training sessions
in our office with an improved
understanding of the disease;
effective communication strategies
that improve interactions between
the caregiver and the person with
dementia; a deeper awareness
of and ability to cope with challenging
by persons with dementia; and
knowledge about safety measures
and engaging activities.
A family member attending the
Family Caregiver Workshop at the
Chapter recently remarked, “There is
no roadmap for this disease, I wish
there was a how-to guide.” Another
agonized over every decision she had
to make regarding her husband’s
care, fearing she would make the
wrong choices. She eventually
became mired in research, unable to
accomplish any task or place a plan
of action in gear. A third caregiver
reluctantly confided, “I wish my husband
had any other disease, even
cancer. At least there might be some
chance he would go into remission
and I could gauge how he was doing
day-to-day. A diagnosis of dementia
does not afford me that possibility.”
Caregivers of persons with dementia
(PWD) often feel their lives are
spinning out of control. It is no wonder.
According to the National
Institutes of Health, caregivers, especially
those caring for a PWD,
are significantly more likely to experience
depression than noncaregivers.
What factors contribute to the emotional
roller coaster ride so many
caregivers experience? Could it be…
Given the enormity of the task of
caring for a PWD and the emotional
toll exacted, is it possible to
reduce the caregiver’s burden? No
simple answer exists for this question, but a good place to start is with
- The innate unpredictability of the
disease? Never knowing what
symptom or new and unusual
behavior will surface from one day
to the next.
- Fear? Wondering whether you will
have the energy or strength to face
the increasing decline of the PWD.
- The constant shifting? Of your relationship
with the PWD, of daily
responsibilities and roles (i.e., paying
bills, food shopping, scheduling
doctor’s appointments, taking
care of legal matters, arranging for
repairs around the home), or of
your own emotions.
- Complicated feelings? The future is
not what you anticipated, family
members you thought would help
shoulder some responsibilities are
not as helpful or not helpful at all.
Perhaps you miss the relationship
you used to have with the PWD,
the intellectual stimulation, the
companionship, the security.
- Loneliness/Depression? As the
PWD’s condition deteriorates,
friends and family often withdraw.
People are sometimes scared to see
the PWD, unsure of how to communicate,
and often retreat, leaving
the caregivers to fend for themselves.
Know yourself. Step back for a
moment and think about your personality.
What kind of caregiver are
you and what impact might this have
on the way you provide care?
Most caregivers can identify with at
least one of these types, if not more
than one. It is important to step back
and examine who you are: how your
personality impacts your caregiving,
your sense of burden, your ability to
solve problems, and your own health.
Knowing yourself — your unique
caregiver perspective — will enable
you to get in your own way less
- The Caregiver in Denial —
you adopt the attitude everything is
fine until a crisis forces you to confront
the reality of the situation?
- The Expert Researcher —
needing to master each new issue
you face. Gathering tons of information
about dementia, medications,
home health care vs. nursing
home placement, etc., constantly
weighing pros and cons.
- The “It is all about me”
Caregiver — Unable to make decisions
because you are so focused
on how the disease is impacting
you and not the PWD.
- The “I am in Charge” Caregiver— All family members
need to follow your lead, including
the PWD. You must always be “in
- The Self Sacrificing Caregiver— The caregiver who is unable to
hold a job or maintain friendships
or relationships because your entire
life (24/7) is devoted to caregiving.
Unable to set boundaries.
- The Paralyzed Caregiver —
Unable to reach decisions in a
- The Reluctant Caregiver —
Trying to reconcile long-standing
feelings of guilt or anger.
- The Hero/Heroine — You can handle
all of this by yourself and
refuse to get any help.
- The Mother — Perpetual
- The “I am in the here and
now” Caregiver — Able to
accept the situation as it is.
Know your boundaries. It is not
only okay to draw lines—what you
will and will not do, can and cannot
do—but having appropriate boundaries
is essential to ensuring your
own well being throughout your
Know your hot buttons. Understand what sets you off. Caring
for someone with dementia can be
very frustrating. Being able to catch
yourself before you reach the end of
your rope should help in reducing
your burden and improve both your
quality of life and that of the PWD
for whom you care.
Joan Griffiths Vega, a local
instructor in Mindfulness Based
Stress Reduction (MBSR), a program
developed by Dr. Jon Kabat-Zinn and
faculty at the Center for Mindfulness
at the University of Massachusetts
Medical School, suggests caregivers
use the following MBSR acronym to
ease stress and improve mood:
In other words, try not to immediately
react to a situation. Hold your
breath or curb your tongue and
observe what is going on before proceeding.
If you can just slow your
words and actions down a bit, anger
will likely diminish. This can be very
difficult, and as with any new skill it
will require time and practice, but if
you are capable of making some
progress, even a little bit, you should
feel your sense of burden begin to
T (Take a breath)
Give yourself permission to
care for yourself. You may experience
grief, anger, sadness, frustration, and
many other feelings. These are all
normal. You are not alone. Keep
reading to learn about additional
ways to support yourself.
1.Educate yourself and others. Learn
new techniques and strategies to help
improve your quality of life and help
sustain your relationship with the
PWD throughout the course of the
disease. Learn about the education
programs offered by the Alzheimer’s
Association, NYC Chapter, enroll in
the Family Caregiver Workshop,
attend our education meetings.
Visit the Chapter’s website for information
about the latest research studies,
advocacy efforts, support groups, arts
and cultural programs, MedicAlert®
+ Alzheimer’s Association
Safe Return® program, Care
Consultation, Early Stage Services,
medication trials, residential care
options, pharmacy discount programs,
the NYC Chapter’s quarterly
newsletter, special events, community
resources, and volumes of information
about Alzheimer’s disease
and related dementias.
For more information, call our
24-hour Helpline at 800-272-3900.
These and all of our programs
and services are available free of
Subscribe to the Alzheimer’s
Daily News online, a publication
of the Ageless Design Research
Foundation, by visiting
2. Develop creative problem solving
skills to address challenging behaviors
demonstrated by the PWD.
When caring for a PWD it is important
to consider what is truly important
and let the other things go.
Avoid arguing with the PWD — you
probably will not win. Develop the
art of being wrong — saying you are
sorry often ends any argument. Begin
trying to accept the situation, diminish
negative self-talk, and release any
anger you may be feeling. Step into
the PWD’s reality, understand their
underlying emotional needs (inclusion,
a sense of identity, attachment,
love, comfort, and occupation
[Kitwood]), and provide validation.
Think outside the box and avoid
reverting to reality and facts.
Consider joining a support group
to explore your feelings and form
connections with others caring for a
PWD. The NYC Chapter has more
than 140 groups (with trained group
leaders), which meet during the day
as well as in the evening. Held
throughout the NYC metropolitan
area, we offer groups for many different
types of situations including
groups for spouses, adult children,
daughters, caregivers of a PWD in
the late stage, caregivers of PWD
with Frontotemporal dementia
(FTD), LGBT caregivers, etc.
You might also consider meeting
individually with Chapter staff for
Care Consultation services, or seeking
individual counseling. For more
information about these options and
more, visit the Chapter’s website or contact our 24-
hour Helpline at 800-272-3900.
3. Consider your relationship with
the PWD. Has it historically been
loving or contentious? Do they push
your buttons? Do you have a strong
attachment to your partner, parent, or
other relative? All relationships are
complicated and dementia further
complicates things in the way it
impacts not only the person with the
disease but everyone involved.
Dr. Roberta Satow, in her book
Doing the Right Thing (2005),
writes: “There is no one day after
which we no longer have to contend
with the compulsion to repeat old
patterns that keep us stuck and
unhappy. . . old patterns and conflicts
that remain either unresolved or
incompletely resolved reemerge
throughout our lives — especially
during stressful times such as caregiving.
If we do not resolve them,
the best we can do is reach a point
where we are more conscious of the
telltale signs that presage their
reemergence. We can get to a point
at which we can realize the meaning
of what we just said or did and not
let our lives or our selves get out of
control. Or we can do even better
than that. We can resolve the underlying
conflicts that cause us to repeat
4. Understand there are no perfect
solutions. The following passage
from Pauline Boss’s book,
Ambiguous Loss — Learning to Live
with Unresolved Grief (1999), is
especially poignant for caregivers of
people with dementia. It perfectly
describes the universal dilemma
faced by many caregivers of a
PWD— the desire to master a situation,
where mastery is impossible:
“If we are to turn the corner and
cope with uncertain losses, we must
first temper our hunger for mastery.
This is the paradox. To regain a
sense of mastery when there is ambiguity
about a loved one’s absence or
presence, we must give up trying to
find the perfect solution. We must
redefine our relationship to the missing
person. Most important, we must
realize that the confusion we are
experiencing is attributable to the
ambiguity rather than to something
we did — or neglected to do. Once
we know the source of our helplessness,
we are free to begin the coping
process. We assess the situation,
begin revising our perceptions of
who is in the family and on what
basis, and gradually reconstruct family
roles, rules, and rituals. We feel
even more in charge even though the
5. Be three steps ahead of a crisis
instead of responding to one. While
it is not always possible to avoid
crises, taking certain steps can help
keep them at bay.
6. Get help in the home or consider
nursing home placement. If the PWD
refuses help but needs it, get it anyway.
Our 24-hour Helpline can provide
you with information about
agencies and how to successfully
introduce help in the home. It is a
transition for both the caregiver and
the PWD, but it is worth it. Ask
Helpline staff for a copy of “Making
Home Care Work For You,” a valuable
guide which addresses a wide
array of relevant topics.
- Take care of legal and financial
matters. Complete a living will,
Health Care Proxy and Durable
Power of Attorney. Attend one of
our Legal and Financial Seminars
to learn more about transferring
assets, supplemental needs trusts,
Medicaid, and Medicare.
- Remove environmental
hazards from the home that
could result in harm to the
PWD (falls, burns, etc.). Visit
for a list of tools and tips for
safety, or contact our 24-hour
Helpline for guidance.
- Remove anything that could
be used as a weapon.
- Remove valuables from the home.
If you do not want jewelry, important
papers such as birth certificates,
or family heirlooms to disappear,
place them somewhere safe.
Give the PWD a laminated copy of
a birth certificate, social security
card, insurance card, etc. or a less
expensive, less sentimental piece of
jewelry to wear.
- If your family member is responding
to telephone calls requesting
money or donating money to charities,
remove the credit card and
checkbooks from the home, place a
block on the phone or stop telemarketers
from calling by registering
with the National Do Not Call
Registry. Consider having mail sent
to a forwarding address or P.O.
Box. Call our 24-hour Helpline for
specific strategies which can
reduce the PWD’s anger (i.e., giving
them something else to do to
refocus their attention and keep
Realize sometimes nursing home
placement is the best option for the
PWD and also for the caregiver. Get
past the negative connotation and at
least obtain good information about
all options, even if you are not
actively considering them or are
ambivalent. The Chapter’s
Residential Care Specialist can be
reached through our 24-hour
7. Connect to your community and
its resources. Find out about programs
in your area including
overnight respite programs, day programs,
programs at local museums to
explore art and art making with the
PWD, ballroom dancing for caregivers
and the PWD, music and
singing events for caregivers and
people with dementia, meal delivery
programs, bill payer programs, visiting
nurse services, and visiting doctors
of a variety of disciplines.
8. Give yourself permission to take
time off and enjoy life. You deserve
it! You need to take care of yourself
first and then you will be able to better
care for the PWD. If you are happier,
the PWD will also surely benefit.
What makes you feel good?
When was the last time you had a
good hearty laugh? Take time to:
Don’t let guilt stop you. Guilt is an
emotion that is real but can have
severe negative consequences. Talk
with someone to help you reconcile
your feelings. Schedule time each
day or each week to enjoy yourself.
Allow yourself to feel guilty but
don’t let it interfere with your taking
time for yourself. If you feel this is
impossible, have the PWD join you
in an activity so you can do it together.
Even if the PWD is confined to a
wheelchair or is nonverbal, they will
appreciate being out and about and
in the presence of others.
- Take your dog for a walk
- Meet a friend for lunch
- Sing songs (at the top of your
- Go to a movie
- Take a class
- Visit a museum
- Go on a vacation
- Read a book
- Sit quietly by yourself
- Attend a support group
9. Strike a healthy balance. While
you may have been thrust into the
role of caregiver, not everyone has
the ability or desire to be a caregiver.
Olivia Ames Hoblitzelle, author of
Ten Thousand Joys & Ten Thousand
Sorrows: A Couple’s Journey
Through Alzheimer’s (2010), quotes
a Tibetan Nun who is discussing balance:
“Maybe you’re already aware of
this,” she replied, “but in Buddhism
we talk about the principle of the two
benefits. The idea is very simple. For
anything to be of benefit to another
person, it must also be balanced with
benefit to oneself. We can get all
trapped into giving too much of ourselves
and lose the balance in relationships.
That’s where this idea of
two benefits can be a helpful
10. Take advantage of the New York
City Chapter’s programs and services,
all of which are offered free of
charge. Our 24-hour Helpline is
available around the clock, 365 days
a year, and is the best place to start.
Call us anytime at 800-272-3900.
— Amy Trommer
Dementia Care Trainer
All four segments of the Family Caregiver Guide were written
Amy Trommer, MSW, Dementia Care Trainer.