Alzheimer's Disease Special Care Units

Daniel L. Paris, MSW

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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