Dementia and Memory Loss Resources

The Confusion Room

Memory loss: The silent thief of our histories, treasured experiences and personalities.  In the face of an unstoppable force, how do we respond?  How do we stay connected to our loved ones as dementia slowly molds them into a new person?  

Approximately 5.5 million Americans have been diagnosed with dementia. We know that many of you are struggling every day with the challenges of supporting a loved one with memory loss. The repetition, poor judgement, wandering and verbal aggression that often accompanies memory loss is a tall order for people to accept and address.

For those of you who may have questioned what the difference is between some of these terms (dementia, Alzheimers, etc), it may be helpful to think of dementia as an umbrella term.  Dementia is the general descriptor for a number of specific conditions.  Some forms of dementia that fit under the umbrella are Alzheimer’s, Vascular, Lewy-Body, Fronto-temporal, Early Onset, HIV, Parkinson’s and more.  The progression of these diseases look different, but the care and management of behaviors have similarities.  Being armed with education and a plan is critical to prepare for the road ahead. 

Every day more individuals and families are coming to terms with the new reality dementia brings.

We’ve seen on countless occasions how memory loss can emotionally impact the caregiver. To shed some light on the subject, we asked Dan Kuhn to sit down with us for a 2 part interview on dementia. Dan is an expert in the Chicago area who trains professionals and caregivers about dementia care. Those interviews will be released on November 9th and 16th and can be found on our YouTube channel here: Part I Part II

We are committed to providing practical advice, tools and resources on the YouTube Channel. We encourage you to subscribe and share the videos with those in your life who need support. Working with a family memory loss can feel destabilizing, and at times you may feel you both are in a state of constant confusion. We are here to advocate, guide and walk with you through the journey.

There are a number of other resources which may be helpful to you or a loved one. Here are some of our top choices:

1. Alzheimer’s Association: The Alzheimer’s Association has a wealth of online tools for caregivers and provides in person connection with support groups and educational events.  Chapters exist across the country for local support and they have a 24 hour helpline (1.800.272.3900) .  Visit their website for information, planning tools and advice on trusted resources. https://alz.org/ 
2. Alzheimer’s Foundation of America: Provides a variety of resources for caregivers including tips, screening services, a helpline and local events.  https://alzfdn.org/ 
3. Daughterhood: This organization develops ‘circles’ for local women who are caring for an aging parent.  Find a circle in your area here:   https://www.daughterhood.org/ 
4. Family Caregiver Alliance: A national organization which advocates for policy change as a ‘public voice for caregivers’.  They offer online support groups focused on memory loss  and have a LGBTQ+ specific group as well.  https://www.caregiver.org/support-groups 
5. “Start With Yes”: This is a quick read and offers an innovative approach.  Authors Cathy Braxton and Tammi Neumann use concepts from Improv and theater to connect with people with memory loss. 

Thanks for the work you do every day, it is our honor to be a part of your network. Don’t hesitate to reach out with any questions or needs.

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