Do Not Ignore the Signs of Dementia

Most people dread the idea that they, or a member of their family, might be diagnosed with dementia. Some people are in denial and go on with their lives, as best they can, until something happens that makes the inevitable impossible to ignore, like a car accident or the person getting lost and unable to find their way home. Nobody wants to absorb the fact that they are losing their mental faculties and, ultimately, their independence. Adult children have a hard time suddenly seeing the role reversal where they are now parenting their parents, or the fact that this change will impact their lives in ways they did not anticipate.

But not facing the truth about severe cognitive impairment can lead to very serious consequences for the one with dementia as well as others. People with dementia are alright, until they are not. There is no schedule that is going to tell you that Tuesday is the day your loved one will fall down the stairs, or that your spouse is going to go out and walk the dog and not be able to find her way back. A car accident where the person at fault has been diagnosed with dementia can result in costly litigation and severe financial consequences.

 Many of the adult siblings we have worked with are arguing over the care of their parent. Often most of the siblings live out of state, while one sibling might live near the parent and, therefore, be assigned the primary caregiver role by default. The person who lives nearby sees the decline in cognitive abilities while whose who live far away are often assessing the condition of the parent from an occasional phone call and do not accept the severity of the situation.

 We have received referrals from dementia organizations where a relative has received a diagnosis but does not want to accept it. We usually approach the situation by pointing out that there is now a diagnosis, and this is a chance for them to be involved in planning for the future. When the approach is put into future plans, it’s often easier to accept.

 Sometimes, a situation has been going on for a few years but is not dealt with until something happens. In one case, the parent left something on the stove and there was a fire. The adult children were not being callous; they were having a hard time accepting that their independent parent was now in need to their help.

 This rings true now as I watch two daughters who live out of state, coping with their mother’s decline. This extremely independent woman is going to lose some of that independence and it’s difficult for everyone, but she’s already hit a tree with her car and the time is now to do something.

 If you have a relative who you think might have the beginnings of dementia, do some research online where a wealth of information is available from the Alzheimers Association, the Association for Frontal Temporal Dementia (FTD) and the Lewey Body Dementia website. There are different types of dementia, and it helps if you are prepared for a meeting with a doctor or a local hospital’s brain center. Dementia does not just effect people who are elderly or seniors. If your partner or relative is acting ‘uncharacteristically’, that may be signs of FTD which is the most prevalent form of dementia for those under 60. In the time that I ran a support group for caregivers of FTD, I had a woman whose husband was diagnosed when he was in his late 30’s, a woman whose 50-year-old daughter was in the final stages of FTD, and parent’s whose 42-year-old son died of it.

 We cannot ignore the needs of people who will ultimately be completely dependent on others for their needs. If you and your family members are having difficulty navigating these fraught conversations, we are here to facilitate and have the experience from working with others who are in your situation.