Dementia's Three Fears

Three things high on the list that many people at risk for dementia fear are losing their driver’s license, losing the ability to handle their own finances and placement in a nursing home. At the center of these is losing one’s independence and the feeling of no longer being in control of one’s life. These fears are all valid. Dementia does increase a person’s dependence on others. It can take away the ability to drive safely if at all while removing the ability to comprehend the dangers involved. It can take away the ability to make sound decisions while increasing impulsivity so that unsound, sometimes disastrous actions occur before someone intervenes. It can make residential placement necessary, while removing the ability to understand why.

How can you avoid these catastrophes? How can you make the transitions to dependence less painful? The answer is that sometimes you can’t. And especially you can’t if you aren’t aware that there’s a problem—or if you resist the idea even in the present of obvious warning signs. Dementia can sneak up on families and do its damage before anyone acknowledges there is a problem at all. We all want to think our loved ones—and ourselves as well--will maintain reasonably good cognitive functioning well into old age. It’s easy to see LBD’s “good days” and “showtime” as the norm and make excuses for the confusion of its “bad days.” It’s easy to overlook the warning signs as the mistakes “anyone makes once in a while.”

But the price for that is losing the chance to prepare, to make plans while the person at risk still can have input. Without that input, later decisions will be harder for the caregiver to make and for the loved one to accept. Without recognition of what the future might bring, caregivers make promises they can’t keep and their loved one feels blindsided.

Some people deal with warnings of dementia by denying it. They insist that nothing is the matter and therefore, no changes need to be discussed. Some face the possibility of dementia head on and look for ways to fight it, even to cure it. Neither of these extremes works well. The first fails because we can only deal with problems we admit are present. The second fails because we can’t fight an incurable disorder like dementia. We have to accept it and then flow with it, adapting to maintain functioning as long as possible.

Prepare for what might happen in the future--the earlier, the better. Caregiver, loved one and anyone else who needs to be should be involved. Have conversations what the red flags are for unsafe driving and financial decisions or that home care has become unsafe—and what to do once they appear. How can a person give up their driver’s license with dignity? Who should be in charge of financial, legal and medical decisions if needed? What alternatives to home care are best?

These decisions made and documented well ahead of time allows the caregiver to know how to proceed and enables their loved one to accept the necessary changes more easily. They may not like the changes, but they will feel some ownership of them. This is true even if they no longer remember the discussion. It is still there somewhere in their subconscious. Over and over, caregivers have supported this with their stories.