Alzheimer's Disease and Related Dementias

Much of EldercareNY's practice is devoted to working with persons with dementia and their families. Arranging care for persons with dementia may be difficult, because they are often resistant to care. EldercareNY has developed a method that has been very successful for introducing home care to those who resist it but are unsafe without it.

"Ninety-nine percent of my clients are living at home with some levels of home care services. Many attend socially enriching programs during the day."

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"I love my mother, but she has always declined my offers to come live with us in Houston. She has just been diagnosed with Alzheimer’s Disease, and I have been told that she does not need to go to a nursing home (which would kill her), but that she must have 24 hour care at home. I said fine, but if my mother doesn’t think she needs any help, she’s not going to take my word for it. I would really like to know how we’re going to pull this off. Money isn’t the issue. She just flatly refuses to consider the possibility of having help. This from a 92 year old woman who can’t make it to the bathroom in time. I live in Texas. Even if I succeed in setting up 24 hour care, how will I know that it’s working without someone professional coming in on a regular basis who can report back to me."

EldercareNY uses a unique approach to helping clients and families coping with Alzheimer's Disease and related dementias to remain safe and independent for as long as possible.

     Assessing the Situation
     Bringing in Home Care Assistance
     Additional Living Options
     When is a Nursing Home the Option of Choice?


Assessing the Situation

Families often need assistance in assessing how their relative’s problem with recent memory loss is interfering with how he/she functions on a daily basis. With all our clients we visit the person in their home to see them in an environment they are familiar with. If the family is not even sure if a home care aide is needed, we will help to make that determination.

It is not unusual for family members to disagree about this issue, and even more common for the person with memory loss to insist that they do not need any help. It comes down to whether or not there are activities in the course of a day that this person cannot complete without the physical presence of another person. That other person may only be needed to provide verbal cues, prompting, or direction. But if we suspect that the absence of a person to provide the verbal cue results in that task not getting done, then that tells us that a person or home care aide is needed.

Initially there may be some difficulty with cooking or meal preparation, shopping, cleaning, and laundry. Or balancing the checkbook and medication management become problematic. For example, someone who has always handled their finances flawlessly is now bouncing checks and/or displaying uncharacteristic erratic spending behavior. Or they are not able to make any sense of what medications they are supposed to take and when they are supposed to take them. Teaching them to use a pillbox proves to be too difficult and only makes them uncharacteristically angry. We want to eliminate factors that contribute to angering or agitating the person with dementia.

We might see someone lose weight simply because they can no longer negotiate the steps involved in cooking or shopping or both. Then we find that they can still do these things if there is an aide there to put them back on track when they get stuck.

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Bringing in Home Care Assistance

When the family agrees that a home care aide is needed, the next problem often is how to introduce a home care aide to the person who is adamant that they don’t need any help. In the case of someone with memory loss, I have a method that I have had a great deal of success with. I do my initial visit to the home of the person in need with the family present. Prior to my visit the family and I have discussed how to handle my introduction; often it is best not to say that I am a social worker, but rather that I am someone the family wanted them to meet, and we improvise from there.

Then I interview the aide or aides on my own that I will have found through one of my sources. Finally, I coordinate with the family and the aide about the next visit to the home, which will include the family, myself, and this aide. I have briefed the aide about what to expect and what we expect of her in this first visit. That is, we will arrive together, and all sit down together, just to talk. We may talk for quite a while, and we will make sure that the aide is involved in the conversation, and that she directs her conversation to the person we hope she will end up taking care of. If all goes well, we might say that we have to get back to work, but she volunteers to stay a little while to chat some more.

It is hard to be convincing about this in writing, but my experience has shown me that this approach is often the only one that will work. There are some people that will never come out and say that they will allow someone to come in and help them, but we find that they are able to bond with the aide and quickly become quite dependent on them. The denial of the need for help actually serves a good purpose; it reduces the level of depression that often accompanies the realization that they can’t manage simple tasks without help. What is so fascinating is that they will allow themselves to be helped if it is done in a roundabout way and not identified outright as help.

We maintain contact with the aide to help her figure out ways to respond to difficult situations. For example, if the person insists that she leave, we may suggest to her that she do that and come back again some time later. Amazingly, the person will let her back in, as if nothing happened. If we find that the person is just too agitated to cooperate with even a very high-quality aide, then medication may help, and I can refer clients to physicians if needed.

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Additional Living Options

I always stress that we are dealing with individuals, and that there are no set answers to these types of questions. Assisted living facilities are usually the preferred option if something must be done. Caution must be used, though, in making this decision. If someone with memory loss has already reached the point where they cannot complete certain tasks without assistance, then they are going to need that assistance in the facility. The problem is that when a facility states that they have a floor specifically for people with memory loss, you can likely expect that the people on that unit are severely impaired, and your relative would likely not be in that category yet. Therefore it would not be the right place for her/him.

The point is: Creativity is needed to make things work, whether it be at home or in a facility. It may be that you would hire an aide in the facility for part of the day to help your relative adjust to the new surroundings.

There are other factors to take into account. If your relative was always a loner, then it would be unrealistic to think that this would change in a facility. On the other hand, if the dementia has caused someone who used to be very outgoing and had many friends to become withdrawn and depressed, then a facility might help. Unfortunately, at this point in time assisted living is not covered by Medicare or Medicaid, and is quite expensive, although less expensive than nursing homes.

Another lesser known option is that of the Family Group Home. These are run by families who generally live in the home also and take care of about five people. To my knowledge the best ones are outside the city, perhaps a two hour drive, and therefore not appealing to most families. However, the care is good and the cost is significantly less than assisted living.

Next Section... When Is a Nursing Home the Option of Choice?
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When Is a Nursing Home the Option of Choice?

We all would like to think that we and our loved ones will never end up in a nursing home, and for many people this will be true. In New York City many people are able to remain at home because it is possible to receive 24 hour care at home coverage from Medicaid without having to worry about the three-year financial look-back that nursing home Medicaid applications are subject to (see "Paying for Care"). Also, more and more people are purchasing long-term care insurance policies which cover the costs of care, enabling them to stay at home.

Sometimes cost is not the issue. When the person in need of care lives with a family member, sometimes the caregiver (usually an elderly spouse or sibling, and sometimes even an elderly adult child, all of whom may have medical and/or psychological problems of their own) is at risk for requiring care herself/himself, unless they have some respite. Home care aides may help, but sometimes the living space is too small, or the person with dementia may act worse toward the family member than she/he does to strangers. These are instances when placement in a nursing home may be warranted. These days nursing homes will only admit people who need help with all activities of daily living; or those who have conditions that require skilled nursing care (Registered Nurse or Licensed Practical Nurse) on a daily basis.

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