Coping with Dementia in the Family

Coping with Dementia in the Family

By Kerry Mills

So often I’ll receive a call from clients concerned about a sudden behavioral change in a memory-impaired resident. And, all too often the cause is an introduction of new medication or a change in the dosage of an existing one. Surprisingly, the first interpretation of the behavioral change is that the “dementia has advanced.”

Let me stress for the record that the progressive stages of dementia do not normally advance suddenly. Progression occurs gradually over time. So, if you notice a sudden behavioral change in a resident or a loved one, it would be wise to consider all possible contributing factors and not conclude the worst-case scenario – a sudden progression of the disease.

Just such an instance happened recently with a man I will call Arthur, who is in the beginning stages of Alzheimer’s. His situation unfolded like this: His wonderful wife, Alice, regularly returns to her home country, in Europe, for a few weeks to see her family while Arthur stays home. This year, Arthur was diagnosed with Alzheimer’s disease. Alice had a decision to make, should she take her trip or stay home with Arthur?

Arthur and Alice have a son who lives with them and he has been a great team member. Arthur is still working part time and attending church every week. Their daughter lives local and stops in whenever she is needed. I encouraged Alice to take the trip, knowing that this might be her last opportunity to go home for quite some time. So, Alice went to Europe and when she returned, Arthur had changed a great deal. He was sleeping all the time, had lost about five pounds, was not interested in doing anything (almost appeared depressed), and seemed disinterested in seeing his “dear ole Alice.”

What happened?! Alice called the doctor, who said, “I think the major change of your going away pushed him into the next stage of the disease.” What a blow! Alice’s guilt quotient went through the roof. She immediately regretted her visit home and felt terrible that she chose to do what she needed to do for herself instead of staying home and caring for her husband.

I advised Alice that I didn’t think her being gone for a few weeks was the likely cause of Arthur’s lapse in behavior. It seemed to me that maybe there was more going on. I suggested that maybe Arthur had become a bit depressed because he missed her and within a few days, he might be better. I knew that they had been adjusting his medication before she left and asked if there were any changes made. I suggested she ask the doctors if any of the medications could have caused these changes in Arthur. As it turned out, Arthur had started a new medication just days before Alice went away. As soon as he stopped taking this medication, Arthur quickly reverted to his lovable self.

There are a few lessons in this event that are worth noting.

•  The first is twofold. If possible, avoid starting a new medication while the primary care partner is absent for an extended period of time. Also, expect that medication changes will likely result in behavioral changes.

•  Second, a change in primary care partner should not be done abruptly. Instead, the new care partner should be merged into the environment slowly while the more familiar care partner is still a part of the scene. Once the loved one appears to be at ease with the new care partner, the more familiar care partner can exit the environment.

•  Third lesson – we, as professionals, need to be careful when offering opinions and reasons for changes in behavior, especially if the care partner’s competency is called into question.
When a behavioral change does occur, don’t panic. Instead, go through a checklist of what might be the cause. Here is a checklist I use in such instances and have found to be very helpful:

1) Has there been any recent change in medication or dosage?

2) Have there been any changes to the environment?

3) Might this person have a urinary tract infection?

4) Has the daily routine been altered?

5) Has there been a change in care partners?

6) Have there been new demands placed on the person?

We have just begun a new year. This is a perfect time to improve your care-giving techniques in order to have more productive interaction with your loved one or a resident who is under your care.

While occasional and erratic behavior is often a symptom of dementia, we should always investigate to determine if an environmental change is causing or contributing to the behavior.

Let’s all work to reduce stress this spring!

About Kerry Mills

Kerry Mills, MPA, is an expert in best care practices for persons with dementia both in the home and in out-of-home health care residences and organizations. She is a consultant to numerous hospitals, assisted livings, hospice, home care agencies, senior day care centers and nursing homes. In her twelve-year career in health care, she has served as executive director and regional manager for numerous long-term dementia facilities. She is an outspoken advocate for persons with dementia, lecturing in Hong Kong, Canada, China, Europe and the United States. Her book, coauthored with Jennifer A. Brush, “I Care: A Handbook for Care Partners of People with Dementia,” (, is the 2014 Gold Award Winner of the National Mature Media Awards.

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