This is Not What Advanced Dementia Looks Like

By December 4, 2014Dementia

All too often public media shows someone with advanced dementia sitting slumped over in a wheelchair. That is not what advanced dementia looks like; it is what poor care looks like. The woman is slumped over because she has nothing to do or is tired and no one helped her lay down.

As a dementia care professional working in the field for over three decades, this is something that makes me really sad. How did our country get to a place where the sight of someone slumped over in a wheelchair – regardless of their age and health condition – would be considered OK?

What happens to babies that are not stimulated, cuddled, and emotionally cared for is well documented. While research is slow to emerge about what happens to people living with dementia who are not stimulated, cuddled, and emotionally cared for, there is abundant anecdotal evidence from dementia experts across the country. Their sense of purpose, meaning, and self-worth erodes affecting their emotional well-being.

People who are living with dementia lose the ability to self-initiate activities and find interesting things to do. If others don’t help them engage in meaningful and interesting activities, they spend long days inactive, unoccupied, bored, and lonely. Is it any wonder that the prevalence of depression is so high for people living with dementia?

When individuals no longer can do for themselves, they need others to assist them. For people who have dementia this means they need to be emotionally cared for as much as physically cared for. They need assistance to feel purpose and meaning, have fun, and do interesting things in daily life – these are basic components of being emotionally cared for.

One important way you can assist someone living with dementia is to continue to engage them in family and community gatherings. For many people being part of a community and an integral part of a family unit gives them a valuable sense of purpose and place. Once someone is living with dementia it’s not always easy to understand their needs and help them to actually enjoy being part of gatherings – so we created a resource to help you. Mark your calendar, It will be available by Nov 17th, just in time to help you prepare for Thanksgiving.

Dementia diminishes many abilities. It never diminishes a person’s humanity. It’s our job as family, friends and professionals to continually ignite their spirits and engage them as vital parts of our communities.

Karen Love is a former speech therapist and long-term care administrator with more than 30 years of experience advancing person-centered practices in long-term service and support settings. She has been a co-investigator of numerous research projects funded by the National Institute on Aging and the U.S. Administration on Aging. She is the Co-Founder of FIT Interactive, which researched and developed FIT Kits. FIT Kits are engagement kits that help family and care partners improve the quality of life of people living with dementia. For more information please go to their website – See more of her work here.

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