Those with Dementia Speak

October 5, 2020 by Judith Allen Shone

The Other Side of the Caregiver’s Role

Sharing my experiences as a caregiver has helped me realize that through it all, a meaningful life is still possible for those with dementia diseases.

But it took being directly involved, hearing words spoken by those with Alzheimer’s, for me to understand.

I trust that stories told by those with Alzheimer’s, or other dementia disease, will help caregivers understand those diseases more fully from the perspective of a loved one, which in turn might shine the focus on caring in a unique and meaningful way. This phase of learning adds to our belief in the value of ‘learning from one another.’

Read or listen to stories from our loved ones
telling us what they understood what was happening

We are grateful to those with early-onset dementia who have been able to tell us about their lives so we can learn how their life seems to them, how it feels. I appreciate so much that they share their situation with us.

If you know of written or spoken stories, brief, short, blogs, books, told by the one with dementia, their own words, and they would care to share them, please pass them on. If you know of any self-written, self-told Alzheimer stories, please pass them on.

I hope to share comments from a loved one’s perspective, so caregivers can see ‘the other side’ of their caregiving role.

(Email me separately from comments. I will connect with you.)

Those with dementia tell their stories!

Lee’s Story: My Diagnosis of Younger-Onset Alzheimer’s Lee Ferrero was diagnosed at 62 with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s), retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County.
Alzheimer’s AssociationUSA

Lost for Words is a blog written by Valerie Blumenthal who was diagnosed with PCA Alzheimer’s disease in her early 60s (Posterior cortical atrophy. An unusual form of Alzheimer’s, it attacks the back part of the brain, responsible for visual function, orientation and spatial awareness, rather than the front,  which affects cognitive function.) UK

Living with Lewy Body Dementia and ComorbiditiesKen Clasper writes regular blog. He is in his 60s and has lived with young onset dementia with Lewy bodies since his mid-50s.   UK

Kate Swaffer: Creating Life with WordsKate Swaffer was diagnosed with young onset frontotemporal dementia when she was 49.  She is married and has two sons and lives in Australia

Gail Gregory – Early-onset dementia
Diagnosis: at 54, Gail lives a full life and writes daily to tell us about it. She is a Guest Author on our site with a page from her diary.
Visit her blog: Too Young for Dementia? Journey with Diagnosis of Early Onset Alzheimer’sUK

Dr. Wendy Mitchell – Young onset dementia
Diagnosis: at age 56, Dr. Mitchell shares her life in her blog. “I may not have much of a short-term memory anymore but that date is one I’ll never forget.” Through her blog she shares her stories so we can understand. – UK

Which Me am I Today? One person’s experience of living with dementia.

The first words from the first poem in the book, Living with Alzheimer’s, A Poetic Expression written by Margaret Barnes Carter, after being diagnosed with Alzheimer’s. –USA

Where Poems Are Born
Deep inside on a cellular level
Poems are born.
At first, a fleeting flash,
A gentle tickle, a whisper.

The whisper grows, shaped into words.
Words collide and turn into strings
then strings to stanzas
then come alive

Only then can the mind
shape words into structure
For others to see and share
and perhaps to grow

Other by those with Dementia

Still Alice: Genova, Lisa: 9781439102817: Books -

Still Alice by Lisa Genova is the story of Dr. Alice Howland, who discovers that she is suffering from (a diagnosis:) early onset Alzheimer’s disease, and struggles to manage life with the illness. She is dismissed from her professorship when she tells her department chair about the condition, and then learns that she may have passed it on to her children. She starts forgetting words, getting lost on her morning job, and ultimately unable to find her way around her own home. – USA

Read the book, see the movie. Realize heartbreaking truths.

Diagnosis: Alzheimer’s and Vascular Dementia

My Love has anosognosia (pronounced an-o-sog-NO-sia or ah-no-sog-NO-sia)— “a lack of ability to perceive the realities of one’s own condition.

Read the article where I explain that a bit.

It’s a person’s inability to accept that they have a condition that matches up with their symptoms or a formal diagnosis.” “It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.

Alzheimer’s stole My Love’s ability to recognize he has Alzheimer’s! He has no knowledge of his disease.

On occasion he has mentioned he feels like he has lost all his memories. But he normally does not accept that he has memory loss and tells me he “remembers just fine” unless I ask for a specific recollection. – Canadacf

Caregivers want to do their best by understanding as much as they can.

I have been interested in what others who have one of the dementia diseases have said about their experiences, how they feel during this period when they recognize their memory is failing, to help me be a better caregiver.

Do something eac to make others smile and your heart sing.


Those with Dementia Speak (c) Judith Allen Shone

Available in paperback, hardcover and ebook from Amazon Available from A Different Drummer Books in Burlington, Ontario, Maria’s Bookshop in Durango, Colorado, The Bookworm in Omaha, Nebraska, plus you can order from Chapters/Indigo in Canada and Barnes & Noble in US or online at booksellers.