You Need “Nancy Drew” On Your Care Team!

Here’s a summary of a typical call we receive:

Engaging Alzheimer’s Representative – Hello, this is Engaging Alzheimer’s. How can I help you?

Daughter (Olivia) of Person with Dementia – My mom (Mrs. Vince) has dementia and is exhibiting aggressive behavior. I don’t know whether we need to increase her meds or move her to an assisted living. Our home care aide (Sylvia) says she can no longer work with mom. What should I do?

Engaging Alzheimer’s Representative – We recommend a visit from our Dementia Coach to assess your mom and interview the home health aide.

Well, in the case of Olivia, she took us up on the offer and invited us to come for a home visit to meet her mom and Sylvia.  As it turned out, “mom” did not need an increase in meds and moving her to an assisted living was also unnecessary.

Here’s the story.  Sylvia was a lovely woman who had been caring for people with dementia many times over the span of her career.  She knew “people like this” and knew “how to handle them”.  Urk!!!  Problem 1 – Who likes to be “handled”?  Not me!  Problem 2 – Sylvia knew Mrs. Vince for almost two years and had become very protective over her, especially about falling. Further, Sylvia wanted Mrs. Vince to eat full meals and shower daily. Mrs. Vince was resistant to these two efforts, which, in the case of showering, often created a situation for falling.

In essence, the problem was a simple case of Sylvia using the wrong approach when interacting with Mrs. Vince. After a few sessions (total of 3 hours) of on-site dementia care coaching with Sylvia, Mrs. Vince was less resistant and Sylvia and Mrs. Vince actually began to enjoy an improved relationship.

There are three parties to this scenario; Mrs. Vince, Sylvia, and Olivia (Mrs. Vince’s daughter). All three have a mutual goal in obtaining optimum quality of life for Mrs. Vince. However, their interpretations of “quality of life” differed. While all three are valid interpretations, Mrs. Vince’s interpretation should be the goal of all parties with due consideration for her safety as well as reasonable outcomes.

Sylvia proved to be dedicated and caring – that was not in question. So, why the problem? Dedication and caring are integral in serving the cognitive impaired. However, the third leg of the stool, skill-set, is equally important. Despite Sylvia’s 20 years as a home health aide, she had never been taught why people with dementia respond the way they do, and instead of trying to learn the why, she did what most people would do, she provided care in a manner consistent with what she believed to be best, with little regard for Mrs. Vince’s feelings in the matter.

In our coaching session we focused on three main points:

• People change. The only constant when working with people with dementia is change.  Therefore, we need to be flexible and ready to change. While Mrs. Vince’s routine used to be to shower daily, her brain was changing and therefore the approach to invite to her to “get ready for the day” needed to change.  In her case, it was a simple change of the words and actually letting her sleep a bit later than she had in the past.

• As people decline in the disease, it is very common that caregivers prepare meals for the cognitive impaired person without the person’s participation. Secondly, the family or care staff then serve the person the meal while they continue about in the kitchen, preparing meals or cleaning up.  The person with dementia is then left to eat by his or her lonesome and often the direct result is a decline in how much food he or she eats.  While Mrs. Vince was no longer able to prepare meals like she once could, she was very capable of putting sugar in coffee and oatmeal.  She was very capable of putting silverware on the table and she was very in tune when someone wanted to be with her and when someone felt they had to be with her.  Sylvia began engaging Mrs. Vince to prepare the table and once they sat together to eat and make small talk or listen to music, Mrs. Vince began eating more.

• Mrs. Vince was in part at risk for falling because she didn’t move much.  This in part because Sylvia was “making” her.  As soon as Sylvia began asking her to help around the kitchen and walk with her to get the mail at the mailbox, Mrs. Vince was naturally up and about more and became more steady on her feet.  We recommended an outside physical therapist to join Mrs. Vince for strength training.  This socialization was enjoyed by Mrs. Vince and Sylvia, and the two of them began exercising because they both needed it, rather than just Mrs. Vince.

And, this particular aide was using the wrong approach with “mom” in certain interactions. Caring for someone who is elderly is often quite different than caring for someone who is elderly and has dementia. Fortunately, the aide was willing and able to learn the appropriate skills needed thereby, avoiding (and dare we say, creating) behavioral problems.

Yes, there are those times when a change in meds is necessary or a decision for out-of-home care is warranted. However, we find the majority of problems arise from a lack of education and training. Increased meds typically decrease the independence and self-sufficiency of the person with dementia and the cost of an assisted living can be prohibitive for many people.

The point of this article is to appeal to families and healthcare professionals to avoid knee-jerk reactions to common behavioral patterns of people with dementia and to not overlook the less dramatic interventions provided by education.

You may remember an article I wrote a few years ago about a primary care family member, who went away for several weeks and the behavior of the person with dementia went significantly downhill. As it turned out, the problem was not the absence of the primary caregiver but a switch in meds right before the caregiver went away. If they had waited to change the meds until after the primary caregiver came back, a lot of guilt and panic could have been avoided.

Much of the problem stems from misinterpretations about dementia. Too many people still think that the person has lost their mind when, in fact, it is a physical change in the brain, which in most cases progresses in severity. But, it is still a condition that can be successfully managed when the caregiver adopts the correct mindset and approach. It is impossible for the person with dementia to adopt a different approach, but this is not true for the family and healthcare professional.

Because of the progressive nature of dementia, the time will come for a move to an assisted living. There may even be a valid reason for increasing meds. However, a premature move or an increase in meds will likely create greater hardship and difficulty than the current behavioral problem.

The Nancy Drew mystery series has been very popular reading since its debut in 1930. The main character (Nancy) is a teenage sleuth that is able to solve every mystery using her calculating personality and her eye for seeing details typically overlooked by other investigators.

As far as we know, Nancy Drew isn’t for hire to help us care for people with dementia. However, we can adopt her investigative style to seek those solutions that do not require “throwing the baby out with the bath water.”