The Dementia Anthology
Articles By Dementia Caregivers and those Diagnosed with Dementia.
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
September 21st was World Alzheimer’s Day.
‘Time to act on Dementia, Time to act on Alzheimer’s.
My Father had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.
It was heartbreaking to see the proud, gregarious, highly intelligent man who knew numerous languages lose his ability to reason from A to B to C, lose his sense of time and space, and shrink inward. We were able to care for him at home until he passed in 2020. It was a rollercoaster with accelerated declines, yet we still had small, precious moments together—bittersweet joy.
This Anthology is the first of many to leverage our community’s diverse experience to support each other and new readers. Empathy and Inspiration.
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Anthology of Dementia Articles | Resources | Organisations.
Carer Mentor Articles:
These include insights, resources, videos and ideas to support your journey.
Directory of the Authors | Writers | Publications included.
Recent additions are bold italic highlighted
Judi Bailey at Falling Leaves
Amy Brown at Living in 3D: Divorce, Dementia, and Destiny
Anne at The Future Widow
Donna Chandler at
Sarah Coomber at Sandwich Season
Sam Craven at
Debbie at Behind Shoji Doors
Anna De La Cruz at GenXandwich
Jodi Sh. Doff at The Long Goodbye
Anna Du Pen at Betwixt and Between Proxy
Kirbie Earley at
Kevin Ferguson at The Centenarian Playbook.
Lydia Fluitt at Dementia, Vascular
Pam Johnston at The Middler
Lindsay Johnstone at
Kerri at the Publication ‘The Other Parenthood’
Alice Kuipers at Confessions and Coffee
Sammie Marsalli at
Sasha Neal at
Tanya Reynolds at Alzheimer’s Caregiver
Tahia Sherebanou Fakhri at Contemplations (includes Dementia Diaries section)
Jessica Smith at Alzheimer’s Awakening.
Joan Stommen at
Janice Walton at Ageing Well
Janine Campbell at
Dementia Chapters of Recommended Reading
1. First-person experience of Dementia and Reference to the types of dementia and symptoms
The first article Judi published about her symptoms and experience in her publication Falling Leaves. The title ‘Falling Leaves. Apathy’ By
Thanks to Judi for using her precious time and energy to share her experience.I recommend reading Judi’s articles about the different kinds of dementia and symptoms. Here’s the one she shared about Alzheimer’s
I had a three-fold interview: nurse, social worker, neurologist. I was asked numerous questions about my physical and mental health and given memory tests-the most trying one was the five-object sequence that I had to repeat immediately and again after a good 10 minutes of information and answering inquiries.
Judi also offers her thoughts on caregiving— her perspective, wishes and needs.
Let’s not forget that Judi has a wealth of experience as a counsellor.
’I’m a counsellor who has given therapy to diverse populations. I’ve sold over 100 feature articles to magazines. I have dementia, and my newsletter provides information about dementia from professional sources and my own experiences.’
Reference to the types of dementia and symptoms
shares an overview of symptoms and conditions associated with Parkinson’s Disease, as a caregiver of her husband. This includes Lewy Bodies/Lewy Body Dementia.
2. A Caregiver’s Journey of Dementia
First symptoms, feeling alone, and finally redemption. Let's just start at the beginning. By
.'Mom, I think you need a neurologist' and other things I never thought I'd say. By
How It Started and How It's Going: Our Journey By
First, There Were Bandaids. I stayed in denial about Mom's "condition" as long as I could. By
'The Long Goodbye. Navigating my parent's dementia, and my brain's attempt to let it consume me'. By Anna De La Cruz
‘A Little Life List: When You're In The S***. Grace, Solace, and the Uncharted Mystery of Alzheimer's’. By Alice Kuipers.
How We Craft Stories That Make Sense of the World. Or Not. Memory Loss: a dramatic shift and the scraps we reach for. By Alice Kuipers
The Toughest Decision I've Ever Made. A Personal Journey. By
‘Dan was becoming more hostile and challenging to manage as his dementia increased. I’d reached the end of what I could do - maybe a home like that was the solution.’The Family Caregiver Has Needs Too. But They Are Often Overlooked. By
. Defining and communicating your needs as the caregiver is important.-
Looking good, is not only to feel good, of course. But to mask (pun intended) any bad feelings going on under our Charlotte Tillbury Flawless Foundation and Pat Mc Grath Divine Rose Cream Blush. As a CranioSacral and Somato Emotional Release Therapist with a 22 year working experience, I can vouch that almost always, the better my patients looked, the worse they felt.
My Dream Comes True Helping Alzheimer's Home Caregivers Of Loved Ones Thank you for sharing this
. I dare folks not to cry at this beautifully poignant essay by Sammie.
3. The Caregiving
I recommend reading this article by Jodi. It may feel uncomfortable and bittersweet. However, she has eloquently and clearly articulated diverse facets of caregiving and the effects of Dementia itself. Thank you Jodi! ‘Caregiving Dementia: A Moving Target.’ By
It's Mum's birthday. Thank you for this article . I know several caregivers whose loved ones are in a care home, trying to navigate regular updates, fraught visits and liaising with staff. My heartfelt condolences for the loss of your mother. Your writing continues to help others.
Dementia Diaries Understanding how compromised minds work. By
Sundowning. Dementia Diaries By
Deciding what to wear. Dementia Diaries By
Giving up the driver’s seat by
Conditions such as Alzheimer’s and dementia put the caretakers of the elderly in a very difficult position. First, the caretakers have to battle the resistance that comes from giving up driving. Secondly, they have to battle the fact that the patient forgets that their abilities are now compromised. Finally they have to battle the denial of resistance and the caretakers have to become the “bad guys” and forcefully enforce the “new rules”.
An important message from
about our caregiving mindset. I'm sorry! Life got in the way. (by life, I mean perfectionism.)How to treat the dementia patient. And unexpected affirmations on the parenting front. By
Let them eat cake! Removing control and keeping the "care" in "caring" By
Denial Is In My DNA. Helping Alzheimer's Home Caregivers Of Loved Ones by
.Obviously, this progress and her ability to recover against many odds gives me hope every morning when I wake up. It may be a false one, but it is all I have, and I am going to hold on to it as long as possible because it has become my motivation for living. Besides, I could see in her silence, she was trying to live. I will fight with her for that. Hope, as illegitimate as it may be, and denial are my best defense mechanisms against deep depression, not always effective, but certainly most of the time. I just try not to think of anything else to avoid that pitfall.
As there are no two Alzheimer's victims alike, there are no two caregivers alike. We are all different in the way we react. That is why there isn't a “supposed to-do list” to follow. Our patience levels vary, as do the personal tools we apply because we are all dealing with very different behavior changes.
A Metaphor for Dementia Caregiving Wrestling Over the Wheel. By
Safety for Dementia Patients while Toileting. Yes. We have to talk about this. By
Techniques, tools and ideas
Memory Issues...How to Know, How to Help Have you heard of Dementia Friendly Communities? by
. Thanks for highlighting some of the signs and signals that can alert us to ‘something more than just aging’ happening with our loved ones. It is a useful list, even if it’s tough to see laid out, it’s good to know.Sammie uses photos and gentle questions to ensure his wife understands the relationships with those she loves and can sustain her identity relative to those around her. Hanging On To Her Identity. Helping Alzheimer's Home Caregivers Of Loved Ones by
Behavior - AGITATION. Good Ways to Avoid Confrontation By
Tools: Spiritual Assessment Identifying Existential Distress by
Emotions: support, connection, disconnection
When Dementia Disconnects Love by
I felt this: “It doesn’t mean he didn’t love me. It just means he lost the ability to interpret what made him look at me like that meant. But I knew.
And that makes me happy.”
-
‘A mom’s love is unconditional. It’s instinctual. It’s secure. Dementia demands that of us. To care the way only moms do. To connect not based on shared memories or even recognition. It demands us to care in the purest way with no expectations. To care in the moment without worrying about the next. Mom may no longer be in our world but we are very much in her world.’
Bridging. On dementia and emotional support by
I think this hesitation is something we all go through.
“I hesitated over taking up a place on this free service, made available to my siblings and me because the hospice had supported our mum’s care in the last week of her life. I was coping, I thought, I was journalling and doing my yoga and having a cry when I needed to. But I felt a growing need to speak to someone about the experience of being with my mum as she died. And honestly, this offer of emotional support, the first my family had received in the 12-year-long experience of our mum’s and dad’s dementia, felt too good to turn down.”
She can’t speak, but she does by
There is so much love in this article, and each article Sammie writes—you’ll feel uplifted too.“When I see her smile, this means she is happy, so I am constantly searching for ways to provoke this expression of happiness. I did find a guaranteed smile. When we leave the beauty shop every Thursday, walking down the street back to our car, I sing to her with a loud chant, “How beautiful you look,” and she repeats my words, imitating my chant and laughing. At the street corner, waiting for the stoplight to change, she grabs me with a hug and a kiss.”
Handling Hurtful Words from Your Loved One with Dementia by It’s painful to read but also excellent advice. I love this little reminder “Remember: When they can no longer express their love for you, how you care for yourself becomes an expression of your love for them.”
I remember the first time my father looked me straight in the eye and said, "You've stolen my money. I want it back now." My heart shattered. After spending hours each day caring for him, this accusation felt like a slap in the face. If you're experiencing something similar, I want you to know—you're not alone in this, and there are ways through it.
Conversations with Someone Who Has Dementia. An exercise in patience by
Useful information, insights and advice—Kirbie compassionately explains characteristics of different types of Dementia and offers her personal recommendations:Over the course of an hour-long visit, he might ask this three or four times, yet with the patience of Job, these kids would give him a patient answer every single time, “Papa it’s Sunday” or “It’s summertime we don’t have school.”
And this is what you have to do - answer it like you didn’t just answer it five minutes ago. And he could tell if he was repeating himself to us, especially at dinner. He never lost his ability to read facial cues.
Between Knowing and Forgetting: A Conversation with My Grandad About Death By
. This article reminded me of how heartbreaking it was to see Dad’s fearFor the first time in a long time, my grandad was fully aware. He knew that he was forgetting. He knew that something was wrong. And, in that brief window of clarity, he finally understood his dementia.
“For fuck’s sake,” he had said. “That explains a lot.”
And then, as suddenly as it had arrived, it was gone.
A Long Day in A&E: My Grandad’s Hospital Stay with Dementia By
I recommend reading Sam’s articles, which landscape societal views of Dementia, and then there’s the articles that share the painful reality, All with love.Older adults with dementia are at a significantly higher risk of depression. Research suggests that whilst the disease itself alters cognition, many individuals are painfully aware of their decline in the earlier stages. The frustration, the loss of independence, the slow erosion of self - it’s unbearable.
He told me he’d had a “good innings,” that I was to “take care of what’s left.” And then, in a moment of pure clarity, he pulled me into his chest.
“But I love you,” he said. “It’s going to be okay.”
And I broke.
4. Finances
Thanks to Kevin for sharing his key learnings and insights. Dementia's Financial Warning Signs. Dementia takes a financial toll long before diagnosis, study finds. By Kevin Ferguson. I recommend reading this to learn what to expect and to try to pre-empt financial issues.
5. Dementia-Specific Health Care Directives
Anna has created a website specifically designed to support caregivers, family, and friends of someone suffering from Alzheimer’s or another Dementia. She offers free downloadable tools and opportunities to seek her advice (Free 30-minute consultation then $80/hr).
Here is the article: Tools: Online Class on Dementia-Specific Health Care Directives. Everything Important to Know
Anna trained as an oncology nurse practitioner and spent much of her 35 year career specializing in palliative care which was not much help when she became the primary caregiver for the love of her life who developed, persevered, and died from Alzheimer’s Disease. She writes about the unspeakable pain of ambiguous loss in general, and the struggle to honor her duty to act as durable power of attorney for health care while desperately not wanting to lose her soulmate, complicated by the multiple failures of the health care system (during COVID) to provide a compassionate end of life experience for her husband.
6. Articles with resources
(USA) It Takes A Village - updated 12.19.24 We can't do this alone. Additional reading, resources, services, podcasts & media Thanks what a fantastic gift of resources.
(UK) Talking care and creativity. A conversation with Lindsay Johnstone by
andSarah shares some resources to help you know 'You are not alone' Finding company on the dementia journey. By Sarah Coomber
'A Q&A with advocate and activist Ai-jen Poo on how to break the isolation of caregiving'. By Amy Brown
'In Caring for aging parents, can we see assisted living as assisted loving?'. By Amy Brown
Amy Brown shares her experience and other resources in her article. ‘Caring for my mother with dementia is an act of love that nearly broke me.’
Need help with your caregiver toolbox? Call a Senior Care Specialist. Save your self some time and a lot of stress. By Kerri
Tools: Dr. Farber's Five Questions. Palliative Care as Narrative Medicine. By
. These questions are useful prompts. I also wanted to highlight Anna’s publication for this reason: ‘I have discovered that I have one copy of the Alzheimer’s gene—APOE4 and I am writing about being a dementia caregiver to both my mother and my husband, so it is at the front of my mind that it could happen to me.’Resources BOOKS, WEB SITES, ARTICLES, MOVIES, PODCASTS By
This resource has been written by a friend I met at the Carers UK online forum:
Dementia Guidance: For people with dementia, Their friends and family. By Derek contact@dementiaguidance.co.uk
Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families.
My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved.
Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.
In our own case we have found them out merely by chance.
I have included one or two suggestions that involve some cost but I would strongly advise you consider them.
7. Fear of Developing Dementia
8. Helpful Links and Organisations.
United Kingdom
Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?
Alzheimer’s Society (UK)
Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here
Memory Cafés. Support groups
Alzheimer’s Research UK - Report Public attitudes towards dementia
The Dementia Attitudes Monitor gives detailed insight into the UK’s attitudes towards, and understanding of dementia.
Findings from Wave 3 below build on Waves 1 (2018) and 2 (2021) and are based on telephone interviews conducted with a nationally representative sample of 2,530 adults in the UK aged 18+ between 7 June and 4 July 2023.
United States
Memory Cafés Support groups.
Kerri at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.
Canada
Alzheimer’s Association Canada Alzheimer’s and Dementia Resources
Alzheimer Society of Canada. There are local affiliates in different provinces. You can find yours here.
The Association of Frontotemporal Degeneration. Resources in Canada
9. Books
Clicking on the image will take you to the Carer Mentor Affiliate Bookshop, where I receive a small commission if you purchase the book.
Recommended by friends in Carers UK Forum:
Other Books about Caregiving and Self-Development.
Caregiver peer mentoring: Let’s share and support each other by leveraging our personal experiences.
For example, questions about a type of Dementia, stage of caregiving, an issue.
Do you have a question about caring for someone with Dementia?
Do you have an article that you could share to help answer someone else’s question?
This page and discussion will remain open indefinitely to help each other.
Thank you for being here, reading Carer Mentor: Empathy and Inspiration and being part of this community network.
If you found something that resonated, helpful information, or a new connection and would like to show your support, please consider becoming a subscriber for £6 a month or £50 a year.
Please Remember to ‘❤️’ LIKE the article to guide others to these resources
Your support is greatly appreciated and helps validate my time and effort.
Thank you!
Hi Victoria, what a great open supportive space this will be. My father is currently end of life care with a dual diagnosis of Alzheimer’s and fronto-temporal dementia. It’s so hard to watch. What helps me in my “living grief” is writing poetry. Just yesterday I have set up my Amazon KDP account to self publish my poems in grief in the hope to raise funds for research. I’ve taken part in remote research for the last year. Every little helps.
Here is one poem to help any readers in grief today -
Ebbs and
Flows: grief comes and
Goes. See, you’re here, yet gone.
Fragile, yet funny; frail, yet strong:
Your smile.
You worked your tail off for this! What a monumental wealth of information. Thanks for featuring me. Do you do that with all new subscribers? It’s terrific and professionally phrased. I couldn’t be happier!!