Alzheimer`s Disease/Pick's Disease

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Question
My husband was diagnosed with Pick's disease in 2009.  Our house burned down and he had an episode where he was in some kind of an imaginary world.  He got very combative, aggressive in driving, OCD, and much much more. Of course, I had noticed in 5-7 years before his diagnosis, that he had changed and he wasn't the person I knew.  He was compulsive, quit 4 different jobs, was very aggressive to me, started shoplifting, talked about sex all of the time to anyone he met, (I think you have the picture), and many other things. The symptom list for Pick's is him all over.  The doctor put him on olanzapine 5mg, so that he is not aggressive to me.  I still have to work for a living so John is home during the day.  He sleep from about 10pm at night until about 5-6pm the next evening.  He is not interested in doing anything, and the only time he wants to do something is if we are going out to eat or if
he has something planned with his sons. I have noticed that he has difficulty using a canopener, opening envelopes, turning TV on etc.  He can only handle one thing at a time. I have to coax him to shave and change clothes. He doesn't do anything on the computer anymore (3 years)he doesn't want to read, even the newspaper.  His sleeping does work for me because, I don't have to worry about him wanting to drive somewhere while I am at work.  He only wants to leave the house if I go with him. I asked about his olanzapine maybe causing the sleeping, but the doctor says that it is a small dose.  They then put him on an antidepressant citalopram, 10mg. I guess, I just feel like he is missing out on so much, and wonder about his quality of life. Is this the most I can expect.  He is 67 and I am 62, so I have a while before I can retire.  I try and keep his life simple, so that he doesn't have an episode.  Should we be doing more, such as vacations, etc. because this is the best its going to get.  I guess I just want to know more about the progression and what to expect.

Joyce Sturdivant

Answer
Hi Joyce, as you probably know, Pick's is one of the frontotemporal dementias.  As you have seen, the personality changes come first with these dementias rather than just early memory loss, and what you describe your husband as having experienced is entirely typical.

Personality change may take the form of apathy and indifference toward past interests, or of disregard for social decorum and for the feelings of others. Poor social judgement, inappropriate sexual advances, or a coarse and jocular demeanor may be seen (i.e. suddenly the formerly proper pastor starts telling dirty jokes to the ladies auxiliary club).  In some people, like your husband, as things progress, the person simply does very little, or displays confusion and poor judgement - rather than just being forgetful. Sometimes the person does fine when told to do something, but cannot undertake the very same thing on his own without prompting and direction. What is lost is the ability to initiate, organize, and follow through on even very simple plans and familiar activities.

The net result can be the person appearing very apathetic as you see with your husband - they may sit for hours doing nothing at all unless prompted by someone else. Change in sleep patterns, with prolonged or excessive daytime sleepiness can be part of the disease especially in those who are showing these apathetic behaviours - it's called hypersomnia.

There really isn't anything you can do about this. It is not a side effect of any medications. As long as he seems content and comfortable, that's the best you can hope for - and he sounds like doing nothing is fine with him. Taking him on vacation or out of his familiar surroundings is likely to be very, very difficult for you and for him. At least you can be thankful he is not restless and agitated, because some people do go that direction, and as you can appreciate, it makes things very hard for the caregiver.

As this progresses, it will look more and more like the other dementias, in that he will lose his understanding of what is said to him, and his ability to speak (called aphasia). He may already not comprehend the written word, and not understand longer sentences. One easy test for reading comprehension is to ask the person to read you some text out loud, and then do what it says (i.e a sentence like "pick up the red hat off the table and put it on your head"). Even if they can read the words to you, they often can't understand what they mean, so that would make reading or computer use impossible for him - and it explains why they can't follow instructions if you leave a note for them such as "lunch is in the fridge".

He is also losing his muscular coordination - both fine and gross. So his fingers won't do what he tells them to do when he wants to use a can opener. It's called apraxia. Eventually, he will have trouble with larger coordination - he will lose his ability to walk because he won't be able to balance, and his brain won't be able to control his legs. These same problems make it hard for him to do everyday things like dress and even feed himself.

So, sadly, he is going to go downhill physically in the the year or two and eventually  he is likely to need a wheelchair. Usually 24/7 supervision and care is required, whether at home or in an institution. The physical decline and changes that occur throughout the disease course become more and more obvious. Eventually, he may have great difficulty swallowing, chewing, moving and controlling his bladder and bowels. Death from Pick's is usually caused by the consequences of these physical changes, most commonly infections in the lungs, skin or urinary tract. Although it can vary widely, the time from the first symptom to the end is typically about eight years, whereas the time from diagnosis is, on average, about five years.

You should start planning for his future care - whether with hired or family assistance at home, or in a facility. It does become very very hard when they become helpless and need so much heavy physical care for all the basics of life. It is also relentless and round the clock, so you really have to be realistic about what you can cope with. After all, he is relatively young, and unlike the more elderly and frail with Alzheimer's, he may be healthier than many overall, and thus may survive longer. Complications of other health issues often contribute to an earlier passing for people with dementia, since it is so hard to detect and treat many health problems in a person who can't tell you what is wrong, or cooperate with tests or treatments.

It's really important that you have good supports in place and plans ready to go for if and when you need them.  After all, if you became ill, even temporarily, you might suddenly be in crisis unless you have backup plans. You may or may not be able to cope with him full time at home - or you may need some time off to look after yourself, have a holiday or a mental health break.

Find out what programs the two of you may qualify for, what supports are available in your area, what facilities and institutions are close by, and what is available for both respite, and longer term care. If you have not already done so and are in the US, see a good lawyer about Medicaid and Medicare rules where you live, and other insurance and estate planning issues you need to plan for and be aware of particularly to protect assets for his care and your own retirement. Find out if you can tap into "sitters" from volunteer organizations or your faith community, who might look out for him if you need to be away for an evening. I know he is sleeping all day right now, but with his impaired judgement, I'm not sure he should be left alone all the time. You might also want to look into adult daycare, if there are any programs where you live.

I really feel for you. It's really disheartening. I know you are doing the best you can. He may not be able to express it, but he's so lucky to have you concerned about him and looking out for him.

Hope this helps.  

Alzheimer`s Disease

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Mary Gordon

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Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience

Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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