|[Thoughts on Dementia___|

by Ellen Lurie Polivy

What happens medically to the brain is becoming better known today. Cure remains elusive. Researchers have come up with two avenues of great potential, one a genetic approach and the second identification of the enzyme associated with plaques and tangles. Unfortunately, the cure wont come anytime soon because drug trials take years. They are not even close to using any new substances on the general population. Long known to scientists and the medical profession, Alzheimer's is a disease of the brain in which the neurons and dendrites of the brain become entangled in sticky plaques and tangles. The brain signals no longer fire and travel along the proper pathways. The part of the brain is affected first will determine the behavior difficulties that the affected person will have.

People affected by Alzheimer's Disease are people with a disease, like any other disease. Unfortunately, it might feel to their loved ones like they vacated their body and became half the person they once were. A wife might have married her husband for his brain and ability to care for her. A husband might have valued his wife's quick wit. The family frequently feels like they have been dealt a rotten deal and this stranger has been foisted upon them. It takes some shifting of your own thinking to be able to cope and manage. It is possible for your loved one to experience many pleasures and in the process teach you some things about life and living that can be a gift to you. We as adults tend to get stuck in reifying experiences. We make a decision about a person or experience, and we live our lives from that belief system. You will notice that your loved one does the same thing. Because their set of experiences change from minute to minute depending on how long they can hold a thought in their head, their interpretations may sound unusual to you. It can help us all who have our full capacities to understand the bizarrness of our fixed interpretations and decisions in our lives. It helps us to be willing to stop and listen and live life in the moment. The insights that you can gain from this teaching will be worth all the efforts you put in to helping your loved one gently pass into senescence.

Different parts of the brain are affected in different people at varying rates deteriorating various mental funtioning.

  1. Memory - first short term memory goes, then long term memory
  2. Word finding ability- The ability to retrieve the correct vocabulary word to make their point. Allowing the person to choose an alternative word(for the moment)will help them not get stuck on that small part of their communicating and be abel to complete the thought. You can then figure out from the context of the statement what was the word they were looking for.
  3. Executive function-to perform a series of small tasks to get something done.
  4. Emotional Resources gained from learning-Wisdom
  5. Maturity states regress in stages toward infancy. The ability to relate to others follows inverse stages of development, adult,teenage,preteen, latency, childhood, infancy. But it is important to have this distiction. The person has the pride, experiences, and history of a lifetime even if they don't remember it at the moment. It is important to treat them with respect.

What does the person have left:

  • Ability to communicate to people who know how to listen properly.
  • Living in the minute
  • Ability to enjoy life's small pleasures-taste, music, beauty(simple, natural beauty), comforting touch
  • Wonder
  • Childlike Emotions
  • Orientation attached to the present feelings. (If I am feeling three years old, then the world around me must be that which I had when I was three: I want my mommy. So where did my mommy go? What? You say my mother is dead. Oh No! Wail...Sob...)

Bizarre Behaviors:

  • Perseverration- Sometimes a thought or feeling stays around a long time and the person can't break the loop by themselves. The caregiver can lead them out of the process by tuning into their thought process and empathizing. From that space of being with the person and yet being a person with a different set of life experiences, the caregiver can find the opening in the continuous loop to segue the person out. The empathy has to be genuine or you will not find the opening and will be frustrated. Put yourself in the other person's shoes. Walk with them if they are walking. Scream with them(in your mind) or in private.
  • Wandering: Where are they going? What are they looking for? There is usually a purpose.
  • Strange behaviors: such as going to the bathroom, but missing the toilet. Perhaps the person is not recognizing the toilet as a toilet. Look carefully from the point of view of the person at the time of day they are likely to use it. Is the area lit up enough? Is there enough contrast between the seat and the toilet? Is the lid up or down? Perhaps they have lost the executive function to lift the seat lid.

Unusual Thinking:
Why do sufferers of dementia say seemingly bizarre or unusual things? A woman who had been happily married for fifty years and has been a widow for five is talking very agitatedly about her husband cheating on her. You know her husband had been loyal. Why would she suddenly be talking about this? A woman looks out the same window she has looked out of for the last thirty years. Today she thinks "they" moved her house. A friend comes into the house to visit. The woman is happy to see him and calls him her son's name. Does she really think that this is her son? Or is she experiencing word finding problems? How do you know? Does it matter? Or you walk in and person says my "son" came to visit me today. You know that her son has been dead a long time. What do you do? What do you say? Keep it general. Don't hurt her emotionally by telling her that her son has been dead a long time. Don't break the thought pattern. Stay with the persons feelings and segue into the present by way of the feelings. For example, you might say to the person something general like, How was the visit? Listen carefully to the answer. That will give you a clue where to take the conversation next. Is she really talking about her son (and therefore feeling like a younger her) or is she just calling the person who visited her son for lack of a better word. She might say something like. He came to fix my stove. Or she might say something that seems on the face of it rather bizarre. For example, "He told me he was getting a divorce" (person might have been perseverrating on a particularly distressing incident in her past that she had a flicker of a memory about)

What can be helped by medication:

  • Depression- Although depression is often associated with dementia, it is not an automatic occurrence and it is treatable by drugs as well as proper handling by a concerned caregiver.
  • Agitation- This is also treatable by medication and behavioral readjustment by the caregiver.It often comes from the person not being able to get her needs met.
  • Memory- to a point in the memory loss there is a medication that can help. It does not reverse memory loss that is already occurred, but will delay the further deterioration by a bit. If caught early enough, this drug might delay the most damaging effects of the disease by a few years, allowing the person to live out their final years in a more intact state of mind.

Here is an exercise you can try. What if you woke up tomorrow morning and found out that the world as you know it has changed. There is a stranger sleeping in your bed and the scene outside your window looks similar but somehow different. When did they put up that new building? And why is that chair there? You never bought it. How would you feel? How would you act? Do you remember having this feeling before? Would you want to run out the door to go to your real home? Would you start screaming? Crying? What would be helpful for you at that time? Are you the type of person for whom it would be helpful if someone told you that you lost your mind, that the time is really 2020 and your husband has been dead for years and you are in a new home?Would you believe them? Would it be helpful for someone to grab you and say where are you going? You cant go out. You'll hurt yourself. Would it be helpful for someone to say. Great, you are awake. It's time for your bath and drag you to the bathtub, undress you and start touching your naked body. How would you feel? How would you want to be treated at a time like this while you are having such feelings.

What if someone came up to you and gently said can I help you, you seem to be upset, allowed you to talk about what was in your mind, your fears and uncertainty and then get you interested in something going on at the moment.

Bathtime is a difficult time in a dementia patients day. Transitions in general are hard and being stripped and out of control is particularly difficult. Try using the visualizing techniqe I suggested above. Imagine yourself in the positon of your patient, without vocabulary to protest, and without the executive function to be able to vizualize what a bath is and the steps needed to take it. Take off clothes,(be cold) step into a tub of water and suddenly go from being cold and dry to warm and wet. Then have someone rub your naked body with something slippery and slimey. Just when you thought things couldnt get worse, you have to stand up and get cold, get rubbed, and have your arms and legs pulled and things put on your body. Wouldn't you be annoyed. How would you want to be treated? Would it have been easier for you if the person gave you some warning at each step along the way?

Other things you can do:

  1. Build compensatory structures. Ie. Calendar, check off sheet for medications. ( "I didnt take my medicine today." " Yes you did." "No I didnt."(Give them dignity) "Well, I could be wrong. Let's check the calendar to make sure." YOU BOTH CHECK THE CALENDAR. "It says right here that you already took your medicine. Look, it is checked off right here on todays date. Today is___. I know that because it is on the newspaper right here on the table." If a person cannot use a calendar, then use a white board and every day change the daily chart for morning afternoon and night. This gives the person a sense of control over her environment.
  2. I have noticed that people who had compulsive traits. Organized environments did well.