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Dementia & Alzheimers Care
Planning and Preparing for the Road Ahead


Alzheimer's disease and other types of dementia can be a
challenging journey, not only for the person diagnosed but also
for their family members and loved ones. Caring for someone
with Alzheimer's or dementia can seem overwhelming at times,
but the more information and support you have, the better you
can navigate the demanding road ahead and determine the long-
term care options that are best suited to you and your loved one.
IN THIS ARTICLE:
Preparing care
Developing routines
Engaging the patient in activities
Planning activities
Handling challenges
Considering long term care

Sleep
Stress
Suicide Prevention
Teen Issues
Work & Career


Assisted living or nursing homes

Preparing for Alzheimers and dementia care
As you come to grips with an Alzheimers or other dementia
diagnosis, you may be dealing with a whole range of emotions
and concerns. Youll no doubt be worried about how your loved
one will change, how youll keep him or her comfortable, and how
much your life will change. Youll also likely be experiencing
emotions such as anger, grief, and shock. Adjusting to this new
reality is not easy. Its important to give yourself some time and
to reach out for help. The more support you have, the better you
will be able to help your loved one.
While some of these tips are directed specifically at Alzheimers
patients, they may equally apply to those with other types of
dementia as well, including vascular and mixed dementia.
Early-stage Alzheimers care preparations
There are some Alzheimers care preparations that are best done
sooner rather than later. It may be hard to consider these
questions at first, as it means thinking about a time when your
loved one is already well down the road of his or her Alzheimers
journey. However, putting preparations in place early helps a
smoother transition for everyone. Depending on the stage of
diagnosis, include the person with Alzheimers in the decision-
making process as much as possible. If their dementia is at a
more advanced stage, at least try to act on what their wishes
would be.
Questions to consider in preparing for Alzheimers and dementia
care:
Who will make healthcare and/or financial
decisions when the person is no longer able to do
so? While a difficult topic to bring up, if your loved one is
still lucid enough, getting their wishes down on paper
means theyll be preserved and respected by all
members of the family. Consider meeting with an elder
law attorney to best understand your options. Youll want
to consider power of attorney, both for finances and for
healthcare. If the person has already lost capacity, you
may need to apply for guardianship/conservatorship.
More information can be found in the Resources section
below.
How will care needs be met? Sometimes family
members assume that a spouse or nearest family
member can take on caregiving, but that is not always
the case. Caregiving is a large commitment that gets
bigger over time. The person with Alzheimers will
eventually need round-the-clock care. Family members
may have their own health issues, jobs, and
responsibilities. Communication is essential to make sure
that the needs of the Alzheimers patient are met, and
that the caregiver has the support to meet those needs.
Where will the person live? Is his or her own home
appropriate, or is it difficult to access or make safe for
later? If the person is currently living alone, for example,
or far from any family or other support, it may be
necessary to relocate or consider a facility with more
support.
Find out what assistance your medical team can provide in these
areas. In some countries, you can also hire a care manager
privately. Geriatric care managers can provide an initial
assessment as well as assistance with managing your case,
including crisis management, interviewing in-home help, or
assisting with placement in an assisted living facility or nursing
home.
Developing day-to-day routines
Having a general daily routine in Alzheimers and dementia care
helps caregiving run smoothly. These routines wont be set in
stone, but they give a sense of consistency, which is beneficial to
the Alzheimers patient even if they cant communicate it.
While every family will have their own unique routine, you can
get some great ideas from your medical team or Alzheimers
support group, especially regarding establishing routines to
handle the most challenging times of day, such as evenings.
Keep a sense of structure and familiarity. Try to keep
consistent daily times for activities such as waking up,
mealtimes, bathing, dressing, receiving visitors, and
bedtime. Keeping these things at the same time and
place can help orientate the person.
Let the person know what to expect even if you are not
sure that he or she completely understands. You can use
cues to establish the different times of day. For example,
in the morning you can open the curtains to let sunlight
in. In the evening, you can put on quiet music to indicate
its bedtime.
Involve the person in daily activities as much as they are
able. For example, a person may not be able to tie their
shoes, but may be able to put clothes in the hamper.
Clipping plants outside may not be safe, but the person
may be able to weed, plant, or water. Use your best
judgment as to what is safe and what the person can
handle.
Communication tips
As your loved ones Alzheimers progresses, you will notice
changes in communication. Trouble finding words, increased
hand gestures, easy confusion, even inappropriate outbursts are
all normal. Here are some dos and donts on communicating:
Communication Do's and Don'ts?
Do
Avoid becoming frustrated by empathizing and remembering
the person cant help their condition. Making the person feel
safe rather than stressed will make communication easier. Take
a short break if you feel your fuse getting short.
Keep communication short, simple, and clear. Give one
direction or ask one question at a time.
Tell the person who you are if there appears to be any
doubt.
Call the person by name.
Speak slowly. The person may take longer to process whats
being said.
Use closed-ended questions which can be answered yes or
no. For example, ask, Did you enjoy the beef at dinner?
instead of What did you have for dinner?
Find a different way to say the same thing if it wasnt
understood. Try a simpler statement with fewer words.
Use distraction or fibs if telling the whole truth will upset
the person with dementia. For example, to answer the
question, Where is my mother? it may be better to say,
Shes not here right now instead of She died 20 years ago.
Use repetition as much as necessary. Be prepared to say
the same things over and over as the person cant recall them
for more than a few minutes at a time.
Use techniques to attract and maintain the persons
attention. Smile, make eye contact, use gestures, touch, and
other body language.
Don't
Ever say things like: Do you remember? Try to
remember! Did you forget? How could you not know that?!"
Ask questions that challenge short-term memory such as
Do you remember what we did last night? The answer will
likely be no, which may be humiliating for the person with
dementia.
Talk in paragraphs. Instead, offer one idea at a time.
Point out the persons memory difficulty. Avoid remarks
such as I just told you that. Instead, just repeat it over and
over.
Talk in front of the person as if he or she were not
present. Always include the person in any conversation when
they are physically present.
Use lots of pronouns such as "there, that, those, him, her,
it." Use nouns instead. For example, instead of "sit there" say
"sit in the blue chair."
Use slang or unfamiliar words. The person may not
understand the latest terms or phrases.
Use patronizing language or baby talk. A person with
dementia will feel angry or hurt at being talked down to.
Use sarcasm or irony, even if meant humorously. Again, it
can cause hurt or confusion.
Planning activities and visitors
As you develop daily routines, its important to include activities
and visitors. You want to make sure that the Alzheimers patient
is getting sensory experiences and socialization, but not to the
point of getting overstimulated and stressed. Here are some
suggestions for activities:
Start with the persons interests. Ask family and
friends for memories of interests the person used to
have. Youll want to tailor the interests to the current
level of ability so the person doesnt get frustrated.
Vary activities to stimulate different senses of sight,
smell, hearing, and touch. For example, you can try
singing songs, telling stories, movement such as dance,
walking, or swimming, tactile activities such as painting,
working with clay, gardening, or interacting with pets.
Planning time outdoors can be very therapeutic. You
can go for a drive, visit a park, or take a short walk.
Even sitting on a balcony or in the backyard can be
relaxing.
Consider outside group activities designed for those
with Alzheimers. Senior centers or community centers
may host these types of activities. You can also look into
adult day care programs, which are partial or full days at
a facility catering to older adults and/or dementia
patients.
Visitors and social events
Visitors can be a rich part of the day for a person with
Alzheimers disease. It can also provide an opportunity for you as
the caregiver to socialize or take a break. Plan visitors at a time
of day when your loved one can best handle them. Brief visitors
on communication tips if they are uncertain and suggest they
bring memorabilia your loved one may like, such as a favorite old
song or book. Family and social events may also be appropriate,
as long as the Alzheimers patient is comfortable. Focus on
events that wont overwhelm the person; excessive activity or
stimulation at the wrong time of day might be too much to
handle.
Handling challenges in Alzheimer's and dementia
care
One of the most painful parts of Alzheimers disease is watching a
loved one display behavior you never would have thought
possible. Alzheimers can cause substantial changes in how
someone acts. This can range from the embarrassing, such as
inappropriate outbursts, to wandering, hallucinations, and violent
behavior. Everyday tasks like eating, bathing, and dressing can
become major challenges.
Painful as some behaviors are, its critical not to blame yourself
or try to handle all the changes in behavior alone. As challenging
behavior progresses, you may find yourself too embarrassed to
go out, for example, or to seek respite care. Unfortunately,
difficult behavior is part and parcel of Alzheimers disease. Dont
isolate yourself. Ask for help from the medical team and reach
out to caregiver groups for support. There are ways to modify or
better accommodate problem behaviors. Both the environment
you create at home and the way you communicate with your
loved one can make a substantial difference.
Considering long-term Alzheimer's and dementia
care
Its the nature of Alzheimers disease to progressively get worse
as memory deteriorates. In the advanced stages of Alzheimers,
your loved one will likely need round-the-clock care. Thinking
ahead to these possibilities can help make decisions easier. To
find links to organizations in your area that may be able to help,
see Resources and References below.
Care at home
There are several options for extending care at home:
In-home help refers to caregivers that you can hire to
provide assistance for your loved one. In-home help
ranges from a few hours a week of assistance to live-in
help, depending on your needs. Youll want to evaluate
what sort of tasks youd like help with, how much you
can afford to spend, and what hours you need. Getting
help with basic tasks like housekeeping, shopping, or
other errands can also help you provide more focused
care for your loved one.
Day programs, also called adult day care, are
programs that typically operate weekdays and offer a
variety of activities and socialization opportunities. They
also provide the chance for you as the caregiver to
continue working or attend to other needs. There are
some programs that specialize in dementia care.
Respite care. Respite care is short-term care where
your loved one stays in a facility temporarily. This gives
you a block of time to rest, travel, or attend to other
things.
Is it time to move?
As Alzheimers progresses, the physical and mental demands on
you as caregiver can gradually become overwhelming. Each day
can bring more challenges. The patient may require total
assistance with physical tasks like bathing, dressing, and
toileting, as well as greater overall supervision. At some point,
you wont be able to leave your loved one alone. Nighttime
behaviors may not allow you to sleep, and with some patients,
belligerent or aggressive behaviors may exceed your ability to
cope or feel safe. Every situation is different. Sometimes the gap
can be bridged by bringing in additional assistance, such as in-
home help or other family members to share the caregiving
burden. However, it is not a sign of weakness if moving to your
loved one to a facility seems like the best plan of care. Its never
an easy decision to make, but when youre overwhelmed by
stress and fatigue, its difficult to maintain your caregiving
standards. If the person with Alzheimers is living alone, or you
as the primary caregiver have health problems, this option may
need to be considered sooner rather than later.
When considering your caregiving options, its important to
consider whether you are able to balance your other obligations,
either financial or to other family members. Will you be able to
afford appropriate in-home coverage if you cant continue
caregiving? Talk to your loved ones medical care team for their
perspective as well.
Evaluating an assisted living facility or nursing
home
If the best choice is to move the Alzheimers patient to a facility,
it doesnt mean you will no longer be involved in their care. You
can still visit regularly and ensure your loved one gets the care
he or she needs. Even if you are not yet ready to make that step,
doing some initial legwork might save a lot of heartache in the
case of a crisis where you have to move quickly. The first step is
finding the right place for your loved one.
Choosing a facility
There are two main types of facilities that you will most likely
have to evaluate for a loved one with Alzheimers: an assisted
living facility or a nursing home.
Assisted Living
Assisted living is an option for those who need help with some
activities of daily living. Some facilities provide minor help with
medications as well. Staff is available twenty-four hours a day,
but you will want to make sure they have experience handling
residents with Alzheimers disease. Also be clear about what
stage your loved may need to move to a higher level of care.
Nursing homes
Nursing homes provide assistance in both activities of daily living
and a high level of medical care. A licensed physician supervises
each residents care and a nurse or other medical professional is
almost always on the premises. Skilled nursing care providers
and medical professionals such as occupational or physical
therapists are also available.
How do I choose a facility?
Once youve determined the appropriate level of care, youll want
to visit the facilityboth announced and unannouncedto meet
with the staff and otherwise evaluate the home. You will also
want to evaluate the facility based on their experience with
Alzheimers residents. Facilities that cater specifically for
Alzheimers patients should have a designated area, often called
a special care unit in the U.S., for residents with dementia.
Questions to ask such a facility include:
Policy and procedures Does the unit mix Alzheimers
patients with those with mental illness, which can be
dangerous? Does the program require the family to
supply a detailed social history of the resident (a good
sign)?
Environment Is the unit clean? Is the dining area
large enough for all residents to use it comfortably? Are
the doors alarmed or on a delayed opening system to
prevent wandering? Is the unit too noisy?
Staffing What is the ratio of residents to staff? (5 to 1
during the day, 9 to 1 at night is normal). What is staff
turnover like? How do they handle meals and ensure
adequate hydration, since the person can often forget to
eat or drink? How do they assess unexpressed painif
the Alzheimers resident has pain but cannot
communicate it?
Staff training What training for Alzheimers care do
they have? Does the facility provide staff with monthly
in-service training on Alzheimers care?
Activities Is there an activity plan for each resident
based on the persons interests and remaining cognitive
strengths? Are residents escorted outside on a daily
basis? Are regular outings planned for residents?
Services Does the unit provide hospice services? What
were the findings in the most recent state survey?
What to expect during a transition
Moving is a big adjustment both for the person with Alzheimers
and you as their caregiver. Your loved one is moving to a new
home with new faces. You are adjusting from being the person
providing hands-on care to being an advocate. Remember to give
yourself and the Alzheimers patient time to adjust. If youre
expecting to move, try to have essentials packed and ready to
go, and as many administrative details taken care of as possible,
as sometimes beds can come up quickly. Work closely with staff
regarding your loved ones needs and preferences. An extra
familiar face during moving day, such as another relative or close
friend, can also help.
Each person adjusts differently to this transition. Depending on
your loved ones needs, you may either need to visit more
frequently or give your loved one their own space to adjust. As
the adjustment period eases, you can settle into the visiting
pattern that is best for both of you.

Related Articles
Resources & References
Related Articles
Alzheimers Behavior Management Caregiving tips
for managing common symptoms and behavioral problems in
Alzheimers patients.

Advance Health Care Directives & Living Wills Thinking
about your end-of-life choices today can improve your quality of
life in the future and ease the burden on your family.

When a Loved One is Terminally Ill Tips for Getting
Through this Difficult Time

Stages of Grief Saying Goodbye When a Family Member is
Dying
Senior Housing

Assisted Living Facilities Making the decision to leave your
home for an assisted living facility can be difficult, but there are
things you can do to ease the transition.

A Guide to Nursing Homes Learn when you should consider
a nursing home for yourself or a loved one, and how to choose
the right one for your needs.
Caregiving

Support for Alzheimers & Dementia Caregivers How to
take care of yourself both physically and emotionally as youre
caring for someone with Alzheimers disease or dementia.

Late Stage & End-of-Life Care Learning to anticipate the
specific demands of end-of-life caregiving can help ease the
journey for both you and your love one.

Hospice & Palliative Care Hospice and palliative care isnt
about giving up hope or hastening death, but rather a way to
get the most appropriate care in the final phase of life.

Caregiver Support & Help While youre caring for a family
member, its essential that you get the support you need.

Respite Care Respite care provides short-term breaks that
relieve stress, restore energy, and promote balance in your life.
Authors: Doug Russell, L.C.S.W., Tina de
Benedictis, Ph.D., and Joanna Saisan, M.S.W. Last
updated: May 2014.
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