Frontotemporal dementia is sometimes called Pick’s disease or frontal lobe dementia. It is never good news when someone you know has dementia, but there are aspects of this rare form which make it particularly had to deal with.
This month I’m adding to my website some writing from Glen Davis, a carer who told me
"I was principal carer of my wife Carole. Our journey together with dementia started in 2000. I retired from my work to care full time for Carole in 2010. In 2015, Carole was admitted to a nursing home as her care required three-shift expertise. I visited daily and befriended many other residents and families, learning their stories. Carole died in 2019, aged 79, from organ failure caused by her advanced dementia."
His story has been published before https://palliverse.com/2016/04/27/glens-story-i-am-the-principal-carer-for-my-wife-carole/comment-page-1/
The resources published here are designed by Glen to fill gaps poorly covered by published literature. These practical tips have been road-tested by many other carers. Frontotemporal dementia is most often diagnosed between the ages of 45 and 65, younger than most diagnoses of Alzheimer’s disease. That of course creates its own challenges for the person, and their loved ones. There is more about the symptoms here. https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia-symptoms
Glen’s tips on communication will help many people. His second paper, “Managing the Rage Stage” was motivated by what he identified as the shortcomings of published material on this subject. He says, “The behaviours characterising the rage stage may include socially inappropriate remarks, unwelcome intimate touching, porn obsessions, sexual abuse, excessive irrational spending, physical abuse, compulsive swearing and emotional abuse. These behaviours can arise unexpectedly and in public, to the embarrassment of those who do not understand, and the distress of the caregiver.”
For those families, this document may be an important resource in managing the challenging symptoms you could experience. I commend them to you.