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How vital to know whether mom has dementia or Alzheimer's?

Mom wants to live in a CCRC facility in Florida where she's lived the past 30 years, but we live in CT. She has been diagnosed with mild to moderate cognitive impairment, but we don't know whether it is Alzheimer's for sure -- she had an MRI that shows age-related issues, but a geriatrician and a neurologist say there is no vascular dementia, which is the second largest cause of CI after Alzheimer's. The geriatrician said that if the MRI has no vascular dementia, then it's likely to be Alzheimer's. The neurologist says she needs additional testing but it will take 3 weeks more. If there an Alzheimer's diagnosis, especially a shortened lifespan, we'd want her to be near us at a CCRC in CT, but we're not sure how to broach that delicate topic with her.

Also, what are some of the implications with Alzheimer's in choosing a place for her?
Status: Open    Jun 13, 2016 - 07:52 AM

Dementia, Senior Living Communities

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3 answers


Jun 18, 2016 - 07:28 AM

I am not a Dr. but do have a wife with moderate to advanced dementia. She is in a Alxheimers certified unit at an assisted living facility. It is my understanding and you most likly already know that Alzheimers is one of many forms of dementia and can only be verified by an autopsy. My wife wife has been in the facility for over a year now. It has been my observation that as the dementia progresses residents will transition from the assisted care unit into the Alzheimers care unit as it provides more intensive care. Many of the assisted living residents are brought into the memory care unit on a daily basis for parties and short visits to help them with the transition as abrupt changes in living conditions can be so stressful many do not recover. Only a door is between the two units and many of the caregivers are the same as such they do not sense a change in living conditions.

Jun 18, 2016 - 11:41 AM

The #1 reason you want a diagnosis in a cognitively impaired situation is to predict the 'trajectory' of the suituation.
It sounds terrible but cognitive impairment whether vascular, Alzheimer's, Frontotemporal, Parkinsons, Lewy body, a terminal disease. Check and recheck the situation for reversable causes but if there are none, then there are two questions you want answered - How long will this person last and what behaviors and problems can we expect until then. . . .

Some like vascular can (relatively soon) lead to a fatal stroke and these people express fewer bizzare behaviors. Alzheimer's, FTD and Lewy body victims can have uncontrollable, dangerous, obnoxous, behaviors that are difficult or impossible to control. Not every person demonstrates every known behavior, but you have to be ready for them.
Another aspect of ALZ specifically is that sadly 'the victim doesnt die' (quickly anyway) ALZ people are generally in very good phyisical health and (sadly) need custodial care for a very long time. And you will need to advocate for her and check on her regularly. If ALZ in the situation you will want to have her close by.

You are talking about continuing care facilities. A big question that is NOT commonly asked. "For what reasons can she be ejected from the facility?" My ALZ wife (Sx started at age 54 dead at 63) was ejected from 3 different day care situations because her behaviors were not controllable and she was 'disruptive'. (Imagine an ALZ person being disruptive? Who would have guessed?) She cried for 6 hours a day (later brought down to 2-3 with strong medications) She would scream, she whould not sit still and she wanted constant attention. Eventually I had to pay for home care and the paid care givers would complain of being exhausted after 6 hours of supervision.

Your mother may become violent (very common) or act out sexually. If she becomes ejected and the care facility has a month to month contract then you are out only trying to find another place. If you have a "one time pay for life" contract, study carefully the conditions under which she can be evicted.

Comments (1) | New Comment

By betharlan on Jun 23, 2016 - 06:43 PM | Like (0)  |  Report

That was excellent information. I'm facing decisions with my Mom and your reply was very helpful.

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Jun 19, 2016 - 10:54 AM

I asked this same question about my husband. He didn't fit the profile for Alzheimers, but I knew he was displaying cognitive issues. Doctors here couldn't tell me much except that he couldn't pass their memory and cognition tests. I did some research on my own and looked at the different types of dementia to find the one that described his symptoms. I discovered that my husband has frontotemporal dementia.

To date, I have not had a medical professional tell me different, when I describe to them the differences. My husband's speech was the first to go along with his sense of empathy. His logic was more impaired than his memory. He never gets lost, nor does he wonder. He hasn't had the personality changes that come with Alheimer's. He still knows how to answer his cell phone and call me. He just doesn't talk.

Unfortunately, I haven't found any doctors or counselors who specialize in FTD in this area. And from what I have read, there is no medication for it. The Alzheimer's meds are not effective for FTD. I have continued to look for answers and resources. I even went to a nutritionist to make sure I was feeding him all the brain nutrients he needed. I would go online and try to get as much information you can get based on your mom's symptoms. I would continue to get as much support and suggestions from local and online groups.

It is a very rough road, but stay as patient with her and yourself as possible. Make a plan for short term and long term actions. Get all your legal documents and finances in order; especially your POA and guardianship paperwork.

Be as gentle in talking to her about it. It is very frightening. Suggest that she allow you to help her as much as possible when making decisions like moving her to an assisted living facility, or bringing in caregivers, or whatever the decision may be. If you stay calm, informed, and ready, the easier it will be in taking care of her. I wish you the best.
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