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Many patients with
Alzheimer’s disease will utilize some form of long term care during the
course of their disease. There are many types of long term care such as
assisted living for independent early stage patients, or a nursing home
for later stage patients requiring skilled care. The decision to use
this service can be a difficult one for the patient and their family.
Part of this difficulty is the process of choosing the right facility.
Part of choosing the right facility is deciding to use an Alzheimer’s
disease special care unit (ADSCU).
Many factors determine
which facility is the best one. This can include finding; the right
level of care, a location close enough to visit, a cost that can be
afforded, a comfortable social environment and a pleasant physical
layout. In choosing a facility, it is necessary to juggle these and
other considerations to find the best one. Everyone will have unique
needs for placement, making the right facility different for each
patient and family. In my job at MGH I usually give a list of
facilities instead of making specific recommendations. I am always
afraid of a facility being chosen not because it is the right one, but
just because the social worker at the hospital suggested it. However
there is one recommendation I always make to families, and that is
finding a facility with an ADSCU.
Managing Alzheimer’s
disease is a difficult endeavor, just ask any family or professional
caregiver. Caregivers face Alzheimer’s disease symptoms such as memory
loss, sleep disturbances, confusion, communication impairments,
incontinence, agitation, depression, aggression, falling, catastrophic
reactions, and many others. The challenges inherent in managing these
symptoms are magnified when patients are in an environment which is not
their home, and which they may have been resistant to enter. An ADSCU
provides the best opportunity for the patient to be successful, meaning
they are as comfortable and safe as possible.
An ADSCU is as the name
suggests, designed for the specific needs of the Alzheimer’s disease
patient. There are two main ingredients to a good ADSCU. First, the
physical layout is designed or modified for Alzheimer’s disease and
normal age related concerns. Second, all facility staff are trained to
meet the specific challenges of Alzheimer’s disease. An ADSCU will have
activities programming modified and presented with disease symptoms in
mind, and the best facilities will also offer programs for the family
such as education seminars or support groups and be strongly involved in
community Alzheimer’s disease activities such as advocacy or education.
The physical design of
an ADSCU should maximize safety and minimize confusion. Some facilities
are designed from the ground up for Alzheimer’s disease while others
have been modified for this purpose. While an ADSCU in a skilled
nursing facility will look very different from one in an assisted
living, the physical design of each ADSCU will have certain things in
common. The facility needs the right level of supervision, at best
staff should be around patients unless they are in their room. There
must be a method of preventing wandering including disguised and locked
doors, and hopefully an indoor and/outdoor wander path. Lighting should
be constant, sound mellow, temperature comfortable and the walls should
be decorated with color coding, signs, memory aides and even interesting
activities. The best facilities will also have sunrooms, private
dinning areas, and a family atmosphere.
Staff
training in an ADSCU should include disease education and techniques in behavior
management. The best ADSCUs will have training involving the AD
Association, their recommended yearly allowance for staff is 12 hours
training before hitting the floors, and 12 hours annual follow-up. The
best ADSCUs should have participated in programs such as the “Train the
Trainer,” and will be familiar with terms like “the Habilitation
Method.” Their staff will know how to manage symptoms with techniques
like distraction, reminiscence and successful non-verbal communication.
Any facility can hang
out a shingle and claim to be an ADSCU, so beware of cheap imitations.
Some take patients with Alzheimer’s disease but have made limited
modifications and train their staff with an annual in-service by their
friendly neighborhood hospital social worker. An assisted living may
turn off stoves, or a skilled nursing designate a wing to Alzheimer’s
disease. In evaluating an ADSCU, caregivers should ask very clear
questions about facility design and staff training. They can also check
with the local Alzheimer’s Association chapter who can often provide a
list of facilities, comprehensive checklists of what to look for, and
even where they have done staff training themselves.
In my experience, it is
the people combined with training that truly make the ADSCU. I have
seen the most compassionate, professional staff in very nice facilities
make the completely wrong decision due to a lack of disease specific
training. I have also seen extraordinary care in cash strapped Veterans
Administration ADSCUs because they have phenomenal people that are
terribly well trained. Obviously the best of all worlds would be these
wonderful, well trained people in a state of the art facility. The
unfortunate reality is the right level of care may be too far away, not
covered by insurance, or have a year long wait list.
I have learned that it
is difficult to predict which facility a family will prefer. Case and
point is that my own grandmother with Alzheimer’s disease is not in an
ADSCU. Some patients will do fine outside an ADSCU, for example an
advanced patient with minimal Alzheimer’s disease management needs may
be fine in a traditional skilled nursing facility. Many facilities
without the full range of design, activities and training still provide
quality care for Alzheimer’s patients. But it is vital to remember that
Alzheimer’s disease requires very special care, and this care is usually
best found in an ADSCU.
Using a quality ADSCU
is one of the most frequent bits of advice I give to caregivers.
Fittingly, one of the places I learned this is from caregivers
themselves. Many of the horrors stories I hear about placements I feel
are caused by an absence of disease specific training or a lack of
appropriate facilities. If one cause of stress in the placement process
is patients winding up in the wrong facility, then using a quality ADSCU
is good stress prevention.
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