I am a Dementia Caregiver
Over 25% of the 53 million family caregivers in the US are caring for a person with some form of dementia*. Dementia is a condition that results from brain disease and progresses through various stages. It’s most common in older adults and interferes with activities of daily living. Alzheimer’s is the most common type of dementia. There are several other types including: vascular, lewy body, fronto-temporal, and mixed.
Podcast Episodes
Exploring Alzheimer's Treatments
Dr. Zahydie L. Burgos Ribot cares for her husband, Francisco, also known as Pako, who is living with Young Onset Familial Alzheimer’s Disease. In this episode, Zahydie and Pako share their caregiving journey. They talk about how they took time to understand and cope with Pako’s diagnosis and process their feelings of grief before telling others. They also discuss Pako’s treatment, including E2814 therapy and Leqembi medication, which help slow down Pako’s Alzheimer’s. They talk about how they focus on living each day with intention and enjoy crossing off things from their bucket list.
Talking to Kids about Dementia
Alder Allensworth cared for her mother who had Alzheimer’s and her father who had vascular dementia. Alder’s inspiration to co-create a children’s tool kit for families came from watching her mother interact with her grandchildren. In this episode of the Happy Healthy Caregiver podcast, we talk about the resources Alder and her friend Brenda created to help children better understand dementia. Alder shares the benefits of having structure in our days, how a continuing care retirement community was the right fit for her parents for a while, how FMLA allowed her to be present for her parents in their final weeks, and what her daily energizing self-care practices look like.
Communicating with Persons with Dementia
Meet Teepa Snow. In this show, we learn how Teepa’s experience caring for grandparents shaped her career focus, the language and visual cues to use to better communicate with our care partner, her self-care rituals, where she obtains her trusted dementia information, how her training may also help better communicate with persons with developmental disabilities, and the story of how she got the name ‘Teepa’.
- Creating Your Self Care Team – Nikki Nurse
- Caregiver Mental Wellness – Kris McCabe
- Recovering from Burnout – Usha Tewari
- A Nomad Caregiving Life – Anthony Copeland Parker
- Long-Term Care Crisis – Susie Singer Carter
- Visual Storytelling – Gina Martin
- Navigating Care Resources – Alyse Dunn
- Emotional & Social Self Care – Carlos Olivas III
- Loving Through Dementia Ministry – Sheila Welch
- Working, Community Care, and Advocating – Aisha Adkins
- Fun Activities with Your Care Partner – Patti Lafleur
- Supporting Millennial Caregivers – Lucinda Koza
- Advocacy During a Pandemic – Mary Daniel
- Rural Caregiving – Meghan Swope
- Should you Lie to Your Loved One? – Jennifer Fink
- Caring for a Loved One with Dementia – Lauren Dykovitz
- Living Without Regret – Rayna Neises
- New Perspectives – Matt Perrin
- Creative Care – Loretta Veney
- Early Onset Alz – Pat Moffett
- Caring for Difficult People – Susanne White
- Incorporating Dad in Wedding Plans – Lisette Carbajal
- Celebrity Journaler – Leeza Gibbons
- Creating AlzAuthors – Jean Lee
- Navigating a Fragmented Healthcare System – Nicole Rochester
- Working Daughter – Liz O’Donnell
- Caregiver Advocacy – Lisa B. Capp
- Changing Care Policies – Lynnette Whiteman
- Sharing Care Responsibilities with Siblings – Lenore Tracey
- An Alzheimer’s Love Story – Marianne Sciucco
- Advocating for Our Loved Ones – Beth Suereth
- The Dutiful Daughter – Judith Henry
- Transformation after Loss – Colleen Kavanaugh
- Spreading the Care Across Family Members – Beth Phillips
Articles & Event Replays
- Challenging Dementia Behavior
- Strategies to Mitigate Challenging Dementia Behavior
- Wine, Women & Dementia PBS documentary
- Agree to Agree When Caring for Someone with Dementia
- Teaching Children about Dementia and Alzheimer's
- Center for Medicare and Medicaid's GUIDE model
- Music is Medicine for the Mind
From Our Gift Shop
Books
Dementia Friendly Products
- The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease and Other Dementias by Nancy L. Mace
- Weeds in Nana’s Garden by Kathryn Harrison
- Still Alice by Lisa Genova
- A Relationship Contract for Dementia Caregivers: Navigating the Complexities and Challenges by Debra Hallisey
Other Dementia & Self-Care Resources
- GUIDE model support for dementia family caregivers by Medicare part B providers
- Teepa Snow – Dementia Care Videos
- Be Light Care – personal care videos & consulting
- Virtual music groups for persons living with a neurodegenerative disease
- Carewell – Care Products
- Connected Caregiver Caregiver App – Coordinate Care
- AlzAuthors – Dementia Book Store & Podcast
- An action plan to share with your faith community to establish a dementia-friendly environment and caregiving ministry
- Respite for All Foundation
- Dementia Support Groups and Memory Cafes at Dementia Spotlight Foundation
- Echobox Memory Vault to help preserve a lifetime of memories and moments.
- Seth Rogen’s non-profit HFC offers several great resources such as the Virtual Dementia Support Groups, their school for your mind: HFCUniverse, and their “road trip” guide
- Short animated video to introduce children to dementia
- Relevate – Brain Health Supplement (HappyHealthy Saves 15%)
- Zinnia TV
- See complete list of current HHC Discount & Promo Codes to help you with dementia care including the variety of games and pets from Ageless Innovations
- Frontotemporal dementia community
Source: AARP and The National Alliance for Caregiving report: Caregiving in the US 2020