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A Respite Resource for Caregiving

One of the most effective forms of respite for families and particularly Alzheimer’s patients is an Adult Day-Care Program.  This can be a wonderful resource for families.  While you tend to other life issues, your person is occupied with interesting tasks and activities commensurate with their functioning and cognitive abilities.  They are fed nutritious meals and, depending on the program, their hygiene and incontinence problems are handled by a professional and caring staff.  

These are generally private pay although under some circumstances Medicaid and private insurance will contribute to these expenses. They often work on a sliding scale and many offer some scholarship funds.  Always check with the program for financial options.  Use of this resource can be very flexible, from 5 days a week to as little as a few hours a week.   Many programs offer extended hours to accommodate job schedules of the caregiver, and some offer evenings, over-nights, weekends and longer stays while a caregiver takes a vacation or gets some well needed respite.   

There are some basics to consider in day care.  Here are a few important ones.

• No adult day-care program will keep a person who is abusive to themselves or others. However, much of the behaviors can be worked with by a program that has a staff trained in the problems brain-injured people have navigating their world. It is important to understand that Alzheimer’s Disease results in progressive brain damage. These people are confused, they are not psychotic in the true sense of that definition. In most cases, abusive tendencies go away of their own accord. Sooner or later, the progressive brain damage will encompass and erase even these behaviors.

• All adult day-care programs will work with behavior problems, but what that entails varies from program to program. Alzheimer’s people pace, wander, yell, twitch, hallucinate, talk to themselves, misinterpret clues, are affected by unexpected noises, unfamiliar people and situations. They respond one way one minute and another way to the same incident the next. And, they become incontinent. I emphasize that it takes experienced staff to understand that the behaviors that develop, while troublesome, aren’t necessarily dangerous to anyone who knows how to work with them.

• Most Alzheimer’s people are responding to a misinterpreted clue in the first place.   By keeping calm, your voice in control and your manner unthreatening, most combative episodes can be dissipated within minutes. Alzheimer’s people respond favorably to lack of stimulation and a quiet safe place, away from where the episode happened is often the best course of action.

• How much time the adult day program gives the caregiver to make other arrangements if the behaviors exceed the limits of their program depends on the policies of the program and staff commitment to working with you. Ask about it before you enroll your person. Some programs are so rigid you get little if any warning of termination.

There are two types of adult day-care programs for Alzheimer’s family members. The Social Model and the Comprehensive Day-Care model.  The ideal situation is one in which the Comprehensive Day-Care Model already exists as an adjunct to the Social Model.

If the Social Program you are considering doesn’t offer an option of continued care in a more comprehensive model, then you need a back-up plan. This may seem like a minor concern at the time you enroll your person, but that back-up plan is essential to the continuity of care.  I recommend that you ask the program director or social worker there to help you develop a plan before they phase your person out.  

That plan can include a number of options.   It can include transfer to another more comprehensive day program, or continued home care with a combination of family members, home-health aides, volunteers and friends for respite.   In either of these choices you will need help in facing the increasing needs and that help can include ways to handle the changing incontinence and hygiene care, adapting the home to make it more user friendly to your person, and emotional support to enable you to face the next phase of care.  While nursing home placement is an option, it shouldn’t be the only option.  All the options should be explored before your person’s needs exceed the scope of their program. 

If what you need is a day-care program that will work with your person over the long haul, then take the time to look for one that will. Otherwise, you both will be facing a major change in routine when you are both at your lowest energy level. Anyone who has cared for an Alzheimer’s person knows how important continuity and routine is to them.  Contrary to popular thought, Alzheimer’s people grow to recognize people, voices, sounds, smells, and the texture of what surrounds their care on levels that are often profoundly beyond what we value as recognition.  And don’t underestimate their ability to form likes and dislikes.  A friend of mine related the following incident:

Her mother had been terminated from an adult day-care program she had attended for over 2 years.   It was several weeks before the daughter found another program able to work with her mother's increasing needs.  While inspecting the new program her mother spotted another a woman she had known in her old program and the reunion of these two ladies was so touching it moved all who witnessed it.  The ladies hadn't seen each other in almost a year.  Both were well into the mid stages of Alzheimer's and both ladies were thought to be well beyond the possibility of such recognition.  Although incontinent both ladies still seemed to hold a bond with each other that many felt was unexplainable given the stage of their illness.  One has to wonder about the sadness both ladies felt when forced to leave their old program.   While the family members were faced with the dilemma of finding other options, both of these ladies must have experienced a certain amount of separation trauma if not a sense of mourning over losing old friends, an aspect of the change in their lives that is not often considered by those involved in their lives.

As I've stated elsewhere, Alzheimer’s people maintain their ability to read body language and voice inflections long into their illness and I know I am repeating myself, but it bears repeating: Even in the late stages, Alzheimer’s people feel frustration, anger, loss, sadness, happiness, joy, love as do all of us, but their ability to channel those feelings productively is at the mercy of their brain.  They become accustomed to their surroundings and the people they see every day. To change environment at a time of transition in their illness can be devastating to them.  That devastation can translate into heightened behavior problems, changes in your ability to toilet them, sleep and eating problems all of which impact the caregiver. The more continuity to their care, the better it is for you and your family member.

These are questions that should be asked prior to entering any adult-day care program:

• How long can they stay in the program?

• How trained is their staff with dementia, and what do they know of the later stage behaviors?  

• What procedures do they have in place to help your family member through their first traumatic incontinence events in a public place? 

• How much grace time do you get to make other placement plans when they enter the mid-stages of care and will you get a referral to a more comprehensive program when the time comes? 

The Social Model:

This program works with early and early-mid stages of Alzheimer’s Disease and the participants must fit a strict criteria of behavior, skills and ability in order to be eligible.

1. The focus is on social activity and interaction with others.  Day trips are sometimes planned so the person’s ability to follow directions, stay with the group, get in and out of vans is important.  Music, singing, social dancing and art therapy are often an integral part of the activities. 

2. Friendships and attachments are often formed between participants and the staff.  

3. It is a good program for a verbally intact person who follows direction well, has a friendly attitude and whose placement in the program is understood to have a limit.  

4. Caregivers are invited to discuss their person's progress and counseling should be available to help caregivers entering the later stages with their people in order to help them make alternative plans when their person nears termination from the program.  

Locations:

These programs are often located in senior centers, aging services centers, hospitals, and in other existing facilities such as office buildings, or rehabilitation centers.  The location often defines how extensive the program can be.  

Because they are often set up in space originally meant for other uses, having a locked facility accessible to only participants and staff is restricted by safety, fire and building codes of the original building plans.  Chronic levels of care require a more involved approval from the health department and this places limitations on behaviors, incontinence, and wandering and hygiene care.    

If they aren't classified as a 'locked facility, doors cannot be locked on the inside. Without a locked facility, the program cannot work with wanderers.   Staff cannot be ever vigilant of those who might make the grand escape or wander off.  If your person didn’t wander when they started the program, they will be terminated if they develop the behavior.  Re-entry can be considered if the behavior abates or is controlled. 

Always be conscious of the amount of space allotted for these programs.  Is the space large, airy and conducive to a variety of activities or is it small, cramped and limited in potential?   How noisy is it?  what are the bathroom facilities like?  Are they designed to accommodate people with the perceptual deficits your person will develop?  

Hygiene Maintenance:  

Building codes  may restrict hygiene management in the facility.   Without showering facilities which meet the codes for handicapped people, late stage hygiene care cannot be done.  While some programs have shower facilities, they aren't necessarily available on an emergency basis due to staff training and job restrictions and facility restrictions.  Showering may be available on an appointment basis.  For the caregiver in the early stage this is one less task to do and should be taken advantage of if offered.

Most of these early stage programs will take the participant to the bathroom as needed. They will usually tolerate the use of diapers but for urine incontinence only (unless otherwise stated.)   However, even in the early mid-stages, Alzheimer’s people often need help adjusting clothing or wiping themselves and there is the occasional 'accident.'  

Behavior Requirements.  

Tolerance for the developing behaviors of Alzheimer’s individuals is set by the program and based on the amount of space, environment, staff numbers, experience and focus.  Talking too much, wandering, refusal to be assisted in toileting or eating, incontinence, combativeness, are all determinants for dismissal.  

Whether a participant is bothering others and how much staff time is required by the person is probably the main measure for tolerance.  

Too often the staff does not have experience specific to Alzheimer's because they are hired to do Socialization.  As a result, the problems that develop are often viewed as bothersome instead of a natural progression of the disease process.   Further, there is no need to become adept because the people are terminated when they become bothersome.

Draw Backs  

There a few.  The main drawback is that your person will be terminated once they exceed the limits of the program.  However, since their behaviors tend to surface with little forewarning, the caregiver often gets little notice themselves regarding termination.  

1. Participants are often phased out of the programs before they cease to benefit from the social activities and the relationships that develop between them, the staff, and other participants because of the onset of wandering, incontinence, belligerence, mounting feelings of loss and confusion.

2. Termination often takes away the only stabilized routine that exists for the entire family.    It is the time the caregiver has come to rely on for respite as well as a work life if they still work.  Without planning for the inevitable, the caregiver is left with few options and no time to make alternative plans.  Considering the time and energy that goes into making alternative plans, particularly if the caregiver works, this can turn into the major crises.   By not alerting the caregiver to the need for other long-term planning in time to avert a major crises, the end result is too often premature placement in a nursing home.   This is a very real problem with this type of program.

   (As an example of how devastating this can be to a family routine I urge you to look at the segment titled:  "Naomi and Ruth," located in the section on Incontinence Care.

3. The change from one facility to another can be very traumatic for the family member at a time when they are least able to cope with change.  They very often experience a drop in functioning which impacts on the caregiver big time and tends to make placement elsewhere more difficult.   One tends to forget that our people can still form friendships.  They also become accustomed to the way staff works with them, they become familiar with the routine, the smell, the look, the aura of their program and to wrench them away has to set them up for problems.  

4. It also behooves me to point out that these programs, while serving a very great need for early stage people, are also as dependent on the financial aspects of maintaining a full enrollment as any other business.   It isn't always in their best financial interest to encourage caregivers to withdraw their people and move them to a more comprehensive and more suitable placement before they are past the point of suitability for their own program.   Thus, 'The Mad Scramble' is too often what the caregiver is left with.  

The Comprehensive Model:

This program will work with early and  mid to-late stages of Alzheimer’s Disease and participants are able to benefit from both the social and the comprehensive model in one place. 

1. These adult day centers can partner with families to make this care happen for much longer than has typically been thought possible.  There are several levels of programs to fit the functional level of each participant.  The participants can usually attend as long as they can be safely transported and it isn't unheard of for attendance to continue for some until just a few weeks before death takes them.  

2. Socialization is offered for as long as participants benefit.  Mid and advanced dementia care generally revolves more around personal care and behavior management issues than nursing and medical issues (although urinary tract infections and skin breakdown can create problems periodically for people who are in late stages of the disease). 

3. Participants can be wheelchair bound with severe functioning and communication limitations.  

Locations:

1. These programs are designed to work with the later stage person as well as the early stage person, and so they must be located in facilities that meet building, safety, hygiene and fire codes for all levels of care.  This means the facility can be 'locked' and thus participants are free to wander around their area without fear of being hurt or of wandering off.  There are often contained outdoor areas of access for the participants.   Movement from level to level is somewhat restricted to assigned areas so that participants in one level don't intermingle with those in a much lower level.  

2. The facility is totally handicap accessible for wheel chairs and bathing facilities.  The physical set up of the space also allows for incontinence and hygiene management.  They have showering facilities and are able to accommodate those who are wheel-chair bound.  There is usually a place to store extra clothing and supplies for each participant.

3. Many have beds for rest time and over-night stays.  Many offer dinner as well as breakfast and lunch to participants whose caregivers work.  Some offer weekend and extended respite stays.

4. The physical layout allows the social model participants to remain intact as a group longer because their wandering, incontinence and other behaviors do not terminate them while they are yet able to benefit from the social activities and interactions.   

5. When it is time to move to a more intensive care level, the transition is less traumatic for them because the basic environment and routine remain intact and the staff is often shared between levels thus maintaining familiarity with staff as well as other participants. 

Hygiene Maintenance:  

1. The transition from being continent to needing and using incontinence products can be a traumatic one for both the caregiver and the person with Alzheimer’s Disease. 

2. Comprehensive day-care programs will have shower units on the premises.  The staff is trained to deal with the routine maintenance of adult hygiene as well as emergency situations resulting from illness, such as diarrhea.  Most of all, they help the caregiver deal with it in a positive informative manner through support groups, training seminars, and private counseling.  

3. Incontinence does not herald the immediate loss of the ability to interact socially.  Participants can continue to benefit from socially based programs for an extended period of time following the onset of bowel incontinence.  To be dropped from a program that is working for you and your family member because of the onset of bowel incontinence is a shame.  

Behavior Management:

1. The focus is on working with a more debilitated patient in a comprehensive day care program.  

2. The program staff is therefore more able to handle behaviors such as wandering, combativeness, and incontinence, which are often inter-related. 

3. The attitude is one of making the environment suit the needs of the participant instead of the other way around.

4. A Comprehensive Program can offer a great deal to Alzheimer’s families through the late stages of care.  It isn’t unheard of for a person to attend their program until a few weeks before their death.

5. Because their level of expertise is Dementia, it very often is the staff that alerts you to changes and how to deal with them.  A woman was terminated from her social program for chattering too much.  The comprehensive program she entered noticed that she didn't talk when she walked.  So they had someone walk with her.

6. These facilities often accommodate a wide variety of day-care options, training, and support services to the caregiver.   

According to Susan Walker, director of DayBreak, in Denver, Colorado...

"Too often, people are discharged from day programs and directed prematurely toward nursing home placement.  Most combative episodes are triggered either by misinterpreted events in the environment, such as unexpected noises, voices, movements of others, or by a professional caregiver who didn't realize the impact of her/his behavior on the participant. 

Ignorance about how Alzheimer's Disease affects reasoning and insight, and lack of adequate training of staff, are the greatest obstacles to maintaining the status quo with people experiencing progressive memory loss and confusion with regard to incontinence."   

(For more information on DayBreak and the comprehensive quality of this program click here!)

Draw Backs   

About the only drawback in utilizing this facility is that because they are in a frail condition in the late stages our people are also at risk in picking up colds, flu viruses, etc., from other participants and staff.  However, even those who aren't in these facilities pick these things up just in the everyday contact between their caregivers and the outside world.   

If you have a choice, I recommend that you begin with the more comprehensive program.  Over the long haul, it simply makes more sense.

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