Dementia and Loss of Control

If you were to ask a person diagnosed with Alzheimer’s disease or another form of dementia what their biggest concern is, they might tell you that loss of control is what they dread most.

We take our right for control of our lives and autonomy for granted, and we would not want anyone to snatch it away from us and control our life.

Imagine one day, suddenly, someone is coming into your life, uninvited, and is micromanaging every aspect of your life. That is exactly what dementia ultimately does.

The fact is dementia does not discriminate. People from all walks of life college professors, professional football and basketball players, national leaders, actors, lawyers, and countless others have been diagnosed. They all experience the loss of control in their life.

 We can renounce several things in life; however, renouncing control is extremely hard. It doesn’t come naturally to a person who’s been independent for most of his or her life. We have been raised to make our own decisions. It is a sign of growth and maturity - to grow up and make your own way in the world.

The first time we experience some loss of control is at retirement.  It is weird how, from retirement onwards, we lose control of things at work, we controlled until that day. It is just around the time or soon after, that many persons receive a diagnosis, since symptoms of Alzheimer’s generally appear in older age.

As the disease progresses, family caregivers often step in, attempting to take a measure of control. It is for their own protection, but the loved one may not always see it that way. A conflict may arise between the person living with dementia and the caregiver.

Your loved one may be convinced that they are still able to pay their bills, drive their car, and generally take care of their own business. It’s understandable that a person who has always been in control wants to hold on to it. This may be true to some extent, in the earlier stages. However, in the later stages, the person’s memory, thinking and judgment skills deteriorate, and their awareness of their abilities also decreases.

The bout of stubbornness they display isn’t for the sake of just being obstinate.  It is rather the last stand for independence. Loss of control equals loss of independence and that is what creates the conflict between caregivers and the ones for whom care is provided.

Minimizing  conflict

Taking control of a situation is often necessary, as dementia progresses. If your loved one views you as a partner in his or her situation, then it will be easier on both of you. We can minimize conflict by giving up control of some things — not the big things, but the little things in everyday life. For instance, picking up two outfits and giving the person the choice to pick what they would like to wear that day, rather than choosing an outfit for the person.

Incorporating controlled choices into your caregiving practices

Personal hygiene

Sometimes personal hygiene is an issue for someone who is holding on to control.  Therefore, instead of announcing that it’s time to take a shower, give them a choice. “Would you like to take your shower this morning or later tonight?” If the reply is “tonight,” then remind them of that choice “tonight.” Always attach with a pleasurable activity- such as having dinner at their favourite restaurant or watching their favourite show.

Nutrition

Allow your loved one to make a choice between good nutritional options. Too many choices are overwhelming, but one or two may be useful for nurturing and honouring their autonomy.

Medications

Give your family member the choice of when they would like to have their medication- “now or in ten minutes” and remind the person of their choice. Share a joke, or a funny story, or give them a complement before you re-approach the person to give their medication. You would have better chances.

Clothing

Caregivers tend to control the flow of laundry from the laundry room to the closet. If your loved one is at a stage where they need help getting dressed, remember to offer them a choice of what they will wear, instead of just picking it out. Keep the choices to a minimum, having matched shirts to pant, etc., beforehand. However, if they choose mismatched clothes, ask yourself- does this really matter? Choice fosters a feeling of independence.

As caregivers, you must take control of the big things that affect the person’s health and safety. However, we can let go of the control over small things in daily life to help your loved one retain some sense of control and exercise their choice. It is good to remember that there is only a fine line between efficient caregiving and arm-twisting.