How “successful” will you be at managing this behavior?

In my last post, I described an action plan for dealing with problem behaviors. In the above scenario, you, the caregiver, are fed up. For needed support, you follow the action plan, research websites, talk with other caregivers, and reach out to friends, family, and anyone else who might be able to help.

Will you succeed at improving the situation? There are four outcomes that I have seen as a geriatrician. Which outcome sounds most likely for you?

Outcome 1: “Great!!” You get particularly useful suggestions. The whole situation improves dramatically. In fact, the process is so positive that you learn new and valuable skills. The experience helps you grow emotionally and spiritually. Mom is much happier and less anxious.

Outcome 2: “OK” You try out many recommendations. You figure out a couple approaches that usually work. You adjust to a new normal with these go-to strategies. Later in life you’ll say, “Wow, that was really tough, but Mom and I made it through, and we managed okay.”

Outcome 3: “Awful” Things get much worse. None of the suggestions work. The situation is overwhelming, and you are severely traumatized. Years later you will have post traumatic flashbacks of yourself screaming and crying. Your mother’s remaining years are terrible.

Outcome 4: “A little bit of everything” You stumble along. Sometimes things work but other times they do not. Some days are fine, but it’s the bad days that you remember. You find out about yourself, and you grow. But caregiving is extremely difficult. You never want to have the experience again. It is a sad time in your mother’s life.

Outcome 1 is a “best thing that has ever happened to me” outcome. This outcome is a blessing but is, unfortunately, not common. In my experience, the most common outcomes are 2 and 4.

Outcome 3 is the worst. Do all that you can to avoid this outcome. Get help. Doctors do not have a magic pill to improve behavior or lessen the Alzheimer’s/dementia. My most challenging work as a geriatrician is to avoid this outcome.

Arriving at the best possible outcome
4 Factors to consider

Some approaches work in one situation but not in another. You are more likely to succeed if you pick the best approach based on your own situation. There are four factors to consider:

• Relationship:
  How strong is your relationship with the person who has dementia? Will the foundation be strong through stressful times? Or will things fall apart? Feelings of resentment are a sign that the foundation is weakening. This is the wrong time for you, the caregiver, to consider doing more. Instead, it is the right time to seek support.
• Patient status:
  How has the Alzheimer’s disease/dementia affected the patient? Some people show little change in personality while others change dramatically. The degree of change is dependent on the areas of the brain that are injured. People who were always pleasant can become hostile. Or a person who did not have a nice personality can become mellow. Does the patient have a less common diagnosis such as Frontotemporal Dementia or Dementia with Lewy Bodies? (These problems are associated with major and distinct behavioral problems.)
  When dementia is mild, reasoning with a loved one may be an effective approach. But trying to get a person to understand does not work well when dementia progresses. A caregiver can say: “I want you to understand.” But it is important to realize when someone truly does not understand. That person may feel punished unfairly. The person may have out of control tantrums like a child who is in the “Terrible Twos.”  Behavior management must be adjusted in these situations.
• Social situation:
  What else is going on in your life. How many other balls are you juggling? How are your finances? Who else is there to help you?
• What is the caregiver capable of?
  Some caregivers are gifted and skilled. They are particularly good at calming situations down and getting things in control. For others, caregiving is a hard to learn skill. Some caregivers are good at one thing but not another. It is awfully hard for a right-handed person to learn to do everything left-handed. It is important for you to know what you can or cannot do. Attempting but repeatedly failing will lead to exhaustion and frustration.

“Solutions” that do not work are likely to make the situation worse. Figure out solutions that work for both the person with dementia and for you, the caregiver.

It is important to succeed. Think carefully about what is likely to work. Are you optimistic or pessimistic? I am a cautiously optimistic person. Sometimes, I try things that turn out to be harder than I expected. If you tend to be pessimistic, give something a try even though you are not sure it will work.

Sometimes family caregivers are apprehensive about coming to an appointment with me. They are concerned that recommendations will be made that increase their burden. But the best solutions help both the patient and the caregiver. Sometimes I suggest ways to get more help for the caregiver. Occasionally, families are surprised to hear that the entire approach needs to change. This is especially true when the approach does not benefit the patient nor the caregiver.

In summary:

• Behavioral problems in people living with Alzheimer’s/dementia are stressful and challenging. Outcomes vary and can be good or bad.
• There are many suggestions about how to manage various behaviors. However, it is important to understand the situation, not just the behavior.
• There are four key factors to consider: The relationship between the patient and the caregiver, the status of the patient, the support system, and the abilities and values of the caregiver.
• To succeed, don’t just think about the behavior. Think carefully about what works best in your situation. This is what I always strive for as a geriatrician. What will work for this patient and this caregiver?

Warmest Aloha,

[email protected]

PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.