I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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.

Ask a question, share an article or offer a personal insight to help someone else.

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Anthology of Dementia Articles | Resources | Organisations.

Carer Mentor Articles:

These include insights, resources, videos and ideas to support your journey.

Dementia Chapters of Recommended Reading

1. First-person direct experience with Dementia

2. Review of Dementia Types By Organisations in the USA and UK

3. The Caregiver’s Perspective and Experience

4. The Caregiving

5. Caregiving Techniques, tools and ideas including

   1. How to connect and communicate more effectively

6. Emotions in Caregiving: support, connection, disconnection

7. Finances

8. Tough decisions around Assisted Living

9. Dementia Health Care Directives

10. Articles with Recommended Resources

11. Fear of Developing Dementia

12. Helpful links and organisations

13. Books

14. Directory of the Authors | Writers | Publications included

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.’

  • Caregiving: Do you have a caregiver?

  • Caregiver Burnout

  • Crafting your Caregiver companion

2. 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.

The Middler

The ABC's of Parkinson's Disease

The information presented here is based on personal experience and research. It should not be regarded as medical advice…

Read more

a year ago · 12 likes · 2 comments · Pam Johnston

3. The Caregiver’s Perspective and Experience

• Early onset Alzheimer’s - what is this strange version of dementia Many of the resources available aren’t geared toward younger people with Alzheimer’s. By

• 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

• Caregiving - The Beginning of a New Journey “Documenting my mother’s diagnosis with Alzheimer’s and Dementia and how I am learning the deep need for policy shifts.” by

• How It Started and How It's Going: Our Journey By

• Diagnosis day And how that led to this By (Patricia Paddey)

• In the Rear-view Mirror: Launching the Alzheimer’s Journey. What feels unbearable in the first miles may one day become your source of strength. by

  “My late wife Judy’s Alzheimer’s diagnosis came to us twice. The first neurologist called it mild cognitive impairment and sent us home with a trial month of Aricept® (Donepezil). In my memoir Dear Judy—A Love Story Rewritten by Alzheimer’s, I wrote about the shock of that moment, the way our long marriage seemed suddenly tilted off its axis, cantilevered over an abyss.”

• First, There Were Bandaids. I stayed in denial about Mom's "condition" as long as I could. By

• What to Do When They're Losing Their Mind, So You Don’t Lose Yours Along the Way. Or, Things to try if Murder/Suicide is not an option 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 Family Caregiver Has Needs Too. But They Are Often Overlooked. By

  . Defining and communicating your needs as the caregiver is important.

• •08• for looking pretty | pa’ viéndome bonito•why I believe it’s fine to wear “a mask” to look and feel better… I wear mine well. By

  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.

• When caregiving feels like betrayal Solace to cling to By

  Of all the hard things about being my husband’s caregiver, one of the hardest is trying to justify or ignore the feeling that I am betraying him.

  Thanks to you and your children for sharing this, Patricia. THIS is such an important question:

  During an online course with Lizette Clouette of Think Different Dementia about planning for the future in caregiving, I mentioned my concerns. “Am I betraying Doug?” I asked her.

  “Before he got sick, did your husband ever say that he wanted you to take care of him and make decisions for him should he lose the ability to do that for himself?” Lizette asked.

  I encourage everyone to read Patricia’s response

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4. The Caregiving

• Dementia Care: What to Do When They’re Losing Their Mind, So You Don’t Lose Yours Along the Way. Or, Things to try if Murder/Suicide is not an option by . Please read this carefully crafted article of resources and advice from Jodi. (USA)

• 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

• Part 1 of 2: The Journey That Broke Us - and Built These Books By . Series: The Emotional Catalyst — Lessons from 14 Years of Caregiving by Derek Lloyd.

  In this article, Derek shares the premise for the book he’s written, ‘How Alzheimer’s Broke Us, ’ and his publication: ‘The Caregiver’s Compass.’

  Derek says, ‘After going through 23 nurses and caregivers we built systems, processes, and a dedicated team of caregivers from scratch.

  We made mistakes. We learned. We adapted.

  And through it all, we kept her home, surrounded by warmth, not hospital walls.

  “No one explained to me how different Alzheimer’s looks in every family — shaped by personalities, distance, old wounds, and unexpected strengths.”

  What struck me most — and still haunts me — was that there was no guidebook for any of it.’

• 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

• Something Else You Didn't Want To Know. Understanding Apraxia: Definition, Types, Causes, and Treatments By

5. Caregiving Techniques, tools and ideas

• The 3 AM Field Guide to Dementia Aggression Your parent is screaming. You’re alone. Here’s what actually works when redirection fails. by Vance Frost

  “Nobody prepares you for this after the diagnosis. The neurologist names it, maybe prints a handout. The handout says “redirect.” It does not say what to do when redirection stops working at 2 AM and your mother is swinging at you because she thinks you’re a stranger who broke into her house. She’s not angry. She’s terrified. And she’s defending herself from someone she doesn’t recognize in a place she doesn’t remember.

  If this is happening right now, start below. If it’s morning and you’re trying to understand what happened, skip to “What just happened.” If you’re planning ahead, start at “Before 3 AM comes again.”

• Behavioral Changes Associated with Dementia - Part 1. How do things change and why? By Kirbie Earley

• Behavioral Changes Associated with Dementia - Part 2 - For Caregivers! How to manage the overwhelming changes of dementia by Kirbie Earley

• Behavior - AGITATION. Good Ways to Avoid Confrontation By Lydia Fluitt

• 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

• How To Connect By Sammie Marsalli

• He Keeps Asking to Go to Work But He's Been Retired for 15 Years By

  Instead of constantly correcting him, she tried something different. She created a "work space" in their home - a desk with papers to grade, lesson plans to review. When he felt the urge to work, she'd redirect him there.

• Keeping Your Loved One Safe A Caring Guide to Managing Wandering in Dementia By

• In this article and the next, Kirbie offers her experience of avoiding hazards at home and practical suggestions on how to make it a safer environment for your loved one with Dementia. Several tips can also apply to caregiving in general. Creating a Safe and Friendly Home Environment for Dementia Caregiving. How to Ensure the Safety of You and Your Loved One By

• Bedroom and Bathroom Safety for Someone with Dementia By

• Tools: Spiritual Assessment Identifying Existential Distress by

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6. Emotions in Caregiving: 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.”

• Being Robbed of Mom by

  ‘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 fear

  For 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.

• Seeing the Person, Not the Diagnosis What happens when people living with dementia are given the chance to create By

  There’s something magical that happens when people feel safe to create and express themselves - and my charity are privileged to witness this on a weekly basis.

  This article shares first-hand experience of how the attendees of The Billericay Men’s Shed created a unique musical composition, that provides the perfect opportunity to experience the person and personality, behind a dementia diagnosis.

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7. 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.

• Financial Considerations for Caregivers of Loved Ones with Dementia Useful insights and tips By

8. Tough decisions around Assisted Living

• 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.’

• When is it Time for Assisted Living or Memory Care? Making the Decision Most Caregivers Dread a Little Easier (I Hope) By

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9. 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 her website

  • 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.

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10. 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 and

• Sarah 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. 

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11. Fear of Developing Dementia

• What if You Knew You'd Develop Dementia? Is it too late to change the course of your brain? By

12. Helpful Links and Organisations.

United Kingdom

• Dementia UK

• 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

• 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 builds 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.

• ReMind UK: an independent charity getting ahead of dementia

  Our vision is a world where early intervention wins to improve the lives of millions more people across the world. Dementia should be diagnosed early and accurately, with a range of treatment options as well as the right support available.

United States

• Alzheimer Foundation of America

• The Association for Frontotemporal Degeneration

• Memory Cafés Support groups.

• Kerri at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.

  

  Click here to go to the Helpline page on the website.

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

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13. Books

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14 Directory of the Authors | Writers | Publications included.

Recent additions are bold italic highlighted

• Judi Bailey at Falling Leaves

• Marc Barnacle at Marc Barnacle Guitar

• Amy Brown at Living in 3D: Divorce, Dementia, and Destiny

• Anne at The Future Widow

• Donna Chandler at If I Get Dementia: Empowering You As a Caregiver

• Sarah Coomber at Sandwich Season

• Sam Craven at Echoes in the Mirror

• 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 The Dementia Chronicles

• Kevin Ferguson at The Centenarian Playbook.

• Lydia Fluitt at Dementia, Vascular

• Michael F James at Michael F James

• Pam Johnston at The Middler

• Kerri at the Publication ‘The Other Parenthood’

• Alice Kuipers at Confessions and Coffee

• Derek Lloyd at The Caregiver’s Compass

• Sammie Marsalli at Sammie Marsalli, Alzheimer's Home Caregiver

• Sasha Neal at Dementia's Daughter

• Patricia Paddey at Searching for the Words

• Tanya Reynolds at Alzheimer’s Caregiver

• Tahia Sherebanou Fakhri at Contemplations (includes Dementia Diaries section)

• Jessica Smith at Alzheimer’s Awakening.

• Joan Stommen at Accept•Adapt•Applaud

• Janice Walton at Ageing Well

• Janine Campbell at •the point of singularity•

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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.

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Read about why I created Carer Mentor here: Who Started Carer Mentor and Why?

One of the main aims of Carer Mentor is to bring together key insights, tips and experiences for the benefit of our community who have limited time and energy, and don’t know what they don’t know. I focus on evidence-based research from trained experts and the real-life experiences of caregivers.

This article resides in the Dementia Anthology, on the Carer Mentor Website.

Table of Contents

1. Fundamental Principles of Communication

2. Understanding the Perspective of Someone with Dementia

3. Dementia’s Impact on Communication

4. Strategies for Effective Communication

5. Specific Challenges and Techniques

6. Teepa Snow’s Five Ways to Say “I’m Sorry”

7. Proactive Caregiving

8. Aggressive behaviour and behavioural changes

9. Other communication articles by authors in the Carer Mentor community

This summary repurposes and amplifies the content, insights and tips from the YouTube video "Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023) and draws on the expertise of

• the Dementia Action Alliance, and their Pathways to Well-being with Dementia—a manual of help, hope and inspiration1. [Click the link to access the manual]

• Melanie Bunn RN, MS, GNP2 (Dementia Alliance of North Carolina dementia educator),

• Teepa Snow (International dementia educator)3,

• “A Caregiver's Guide to Lewy Body Dementia” By Helen Buell Whitworth & James Whitworth 4

The teachers in the video are Lynette Wilson5 and Pat Snyder.6 I found this video thanks to ’s7 essay: ‘This is the kiss test. Plus: Caregiver coach Pat Snyder on being proactive and positive,’ that introduced me to Pat Snyder’s work:

As John’s disease progressed, Pat developed a strategy that she now advises all her caregivers to try. She calls it “personifying the disease.” You separate the disease from your loved one, give it a name (Lewy is good) and treat it as your adversary, one that can be outsmarted and outmaneuvered.

"Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023)

When you're communicating with the person who is living with dementia, do you want to correct or do you want to connect?

The core message of the video revolves around prioritising connection over correction when communicating with individuals living with dementia, aiming to preserve personhood and create a gentle journey for all involved.

Click the image to access the manual. I’d recommend giving them a donation if you use the manual. It’s a comprehensive resource!

1. Fundamental Principles of Communication

• Connect, Don't Correct: The overarching goal is to connect with the individual, not to correct their perceptions or statements. This fosters a more positive and gentle experience.

• Preserve Personhood: Recognise and uphold their needs, wants, emotions, personality, relationships, and life story. As Melanie Bunn states, "communication is the glue when other things start to fail."

• Create a Gentle Journey: Aim for a calmer, less stressful experience for both the individual with dementia and their caregivers and family. While the disease itself cannot be changed, the experience of it can be significantly influenced by communication strategies.

2. Understanding the Perspective of Someone with Dementia

Individuals living with dementia often retain a sense of self and deserve respect, despite cognitive changes. The video voices the experiences of dementia sufferers from their perspective:

• Self-Perception: "I'm still me. I have the same likes. I have the same personality... I'm forgetful, I'm slower, but I can still do things. I'm rational. I'm an adult. I deserve respect."

• Communication Challenges: Difficulty finding words, vocabulary loss, mind blanks, derailed sentences, difficulty projecting voice, stuttering, losing train of thought.

  • Inability to keep up with fast speech; needing "more time and less distraction."

  • Reduced word processing: "even in the early stage I might not hear one out of every four words that you say to me... in the moderate stage I might lose my consonants so that I only hear vowels."

• Emotional & Sensory Experience: "I am absorbed in my own stuff, my view, my feelings, my needs and I also add your feelings to mine and I can combine them into one big muddled patch of feelings."

• Body language and facial expressions often matter more than words.

• Acting out (aggressive/agitated) can stem from physical or emotional pain, even if the pain isn't consciously felt but registered by the brain.

• Living in the past: "If I'm back in time when I ask about my mother, my thoughts are about her... Can you just reassure me about that in some way I don't need to hear that she's dead all over again."

3. Dementia's Impact on Communication

Cognitive changes, particularly in the frontal lobe (which controls impulse, reasoning, and filtering), lead to specific communication patterns:

• Inappropriate Behaviour/Language: Preserved brain areas may retain "racial slurs, curse words and sex talk."

• Word Salad: Using real words jumbled into meaningless sentences (e.g., "he uses the Kumbaya stick and the dues that go with the donks").

• Word Substitutions: Using words close to what they mean but not quite accurate (e.g., "mister" instead of "professor," "newspaper" for "book").

• Repetition and Memory Gaps: Repeating themselves or forgetting instructions.

• Distorted Reality: Denying what is true, or stating something as true that is false.

• Appearing Irritated, Scared, or Too Personal with someone: Due to compromised impulse control and filter.

• Thinking Errors: Believing "the first information they receive because they cannot evaluate it and make decisions about it."

• Language Regression: If English is a secondary language, they may revert to their primary language.

• Fluctuating Abilities: Communication abilities "fluctuate from day to day and from hour to hour" due to shrinking brain tissue and decreased neuro-chemicals. This means what works one time may not work another.

• Increased Difficulty When Unwell: Communication decreases if the person is sick, on certain medications, or as dementia progresses.

4. Strategies for Effective Communication

Poor communication, even minor instances, can have significant consequences, ranging from "getting no response from the person living with dementia to a behavioural meltdown."

Effective communication is about making a connection, not necessarily about factual accuracy.

• Environmental Factors:

  • You may need to create a "quiet and calm" environment (e.g., turn off TV, limit people).

  • Ensure "good lighting" to avoid misinterpreting shadows as holes or objects.

• Approach and Connection:

  • Observe First: "Stop and observe the person closely" for recognition, facial expressions, discomfort, and mood.

  • Announce Presence: Speak from about six feet away ("knock knock” and “Hi").

  • Identify and Name: If recognised, use their usual name ("Hi Daddy, hi Mother, hi sweetheart"). If not, try their first name (often remembered earlier in life). Always identify yourself ("Hi Jimmy, it's Mary").

  • Slow and Frontal Approach: "Always approach the person slowly and from the front if possible."

  • Be at Eye Level: "Try to sit at their level as you talk with them and maintain eye contact."

• Appropriate Physical Contact: Touch "conveys interest and can provide reassurance," but assess if it's appropriate for that individual at that time.

• Non-Verbal Communication is Key:

  • Only about 7% of communication is verbal. "About 55% of what we're trying to say is communicated through our body language... and about 38% of what we communicate is through our tone of voice."

  • If verbal and non-verbal communication contradict, non-verbal will be believed.

• Body Language: Stay "calm, open, look interested," use appropriate hand gestures.

• Tone of Voice: Be "friendly, not bossy or critical, not condescending." Use a "deeper" pitch and avoid talking louder, as hearing is often not the primary issue.

• Speed of Speech: Be "slow and easy, not pressured and not too fast."

• Facial Expressions: Humans read facial expressions in as little as 17 milliseconds. Maintain positive, interested expressions.

• Staying Present: "You can't be perceptive if you aren't in the moment... we miss out on 50 percent... of our Lives by not being present."

• Giving Instructions/Requests:

  • Short, Direct Messages: "Let's go to the bathroom," "Put on this shirt."

  • Simple Choices: Offer "either or" choices ("red shirt or blue shirt").

  • Visual Cues: Hold up items (e.g., shirts) while speaking.

• Involve Them: Ask them to "do something to help you" (e.g., folding laundry).

• One Step at a Time: Break tasks into single steps, writing them down if helpful.

• Avoid "Are you ready?": The answer is almost always "no." Be creative in your approach if the answer is negative.

• Responding to Distress/Frustration/Anger:

  • Identify Needs: Determine if needs are physical (tired, pain, hunger, discomfort) or emotional (afraid, lonely, bored, angry, excited).

  • Empathy, Not Forced Reality: "Sounds like you're really tired," "It looks like you're angry," or "It seems like ..whatever."

  • "I'm sorry you're upset," NOT "There's no reason for you to be this upset."

  • Simple Sentences: "Are you cold? Are you tired? Ready for bed?"

  • Redirect Attention: Once they are listening, redirect to a preferred activity, music, or treat.

• Maintaining Positive Interactions:

  • Stay Positive and Friendly: Praise efforts, offer thanks and appreciation.

  • Laugh With Them: Appreciate their humour.

  • Go Slow and Go with the Flow: Be an "improv actor" – respond in a way that aligns with their current reality.

• Acknowledge Emotions: "It seems like..." or "I can see you are..."

• Familiar Words/Cues: Use words and pictures they are familiar with to avoid miscommunication (e.g., "take a leak" example).

• Be Prepared for Repetition: Having the same conversation over and over.

• No Arguing: They are concrete thinkers and "believe what they believe."

• Expect Outbursts if the conversation moves to something they don't want to do.

• "They are doing the best they can."

5. Specific Challenges and Techniques

• Capgras Syndrome: An irrational belief that a familiar person (usually the closest caregiver) has been replaced by an imposter.

  • Strategy: Use your voice to compensate. Talk to them before they see you. Creative solutions like calling on the phone and walking into the room while still talking can help recognition.

• Therapeutic Fibs: When direct truth is distressing or unnecessary.

  • Strategy: Avoid re-traumatising by stating painful facts (e.g., telling them a deceased parent is dead again). Instead, give gentle, non-committal responses that don't contradict their reality (e.g., "No, haven't talked to her today" or "They were doing fine the last time I saw them").

6. Teepa Snow's Five Ways to Say "I'm Sorry"

These phrases are powerful tools for de-escalation and connection, focusing on the individual's emotional state, regardless of fault:

1. "I'm sorry I was trying to help."

2. "I'm sorry that I made you feel angry or irritated or frustrated or sad or isolated." (Focuses on their feeling, not the facts.)

3. "I'm sorry I made you feel like a child / stupid / like an idiot."

4. "I'm sorry that happened." (From their perspective, acknowledging their experience.)

5. "I'm sorry this is hard. I hate this for you." (Acknowledges the difficulty for both parties.)

7. Proactive Caregiving

• Identify Triggers and Stressors: Reflect on what causes negative reactions in the individual with dementia.

• Proactive Avoidance: Once identified, "make every effort to avoid those."

• "Outsmart Lewy/Louie": Proactively anticipate challenges and have techniques in mind. [Pat Snyder sustained her husband’s personhood by separating him from his diagnosis of Lewy Body Dementia. She calls the disease ‘Louie”. Giving the disease a separate persona to blame deescalates frustrations]

• Adapt and Stop: If a strategy isn't working, "stop, stop it, don't keep repeating it." Step back, re-evaluate, and try a different approach.

8 Aggressive behaviour and behavioural changes

• The 3 AM Field Guide to Dementia Aggression Your parent is screaming. You’re alone. Here’s what actually works when redirection fails. by

  “Nobody prepares you for this after the diagnosis. The neurologist names it, maybe prints a handout. The handout says “redirect.” It does not say what to do when redirection stops working at 2 AM and your mother is swinging at you because she thinks you’re a stranger who broke into her house. She’s not angry. She’s terrified. And she’s defending herself from someone she doesn’t recognize in a place she doesn’t remember.

  If this is happening right now, start below. If it’s morning and you’re trying to understand what happened, skip to “What just happened.” If you’re planning ahead, start at “Before 3 AM comes again.”

• Behavioral Changes Associated with Dementia - Part 1. How do things change and why? By

• Behavioral Changes Associated with Dementia - Part 2 - For Caregivers! How to manage the overwhelming changes of dementia by

• Behavior - AGITATION. Good Ways to Avoid Confrontation By Lydia Fluitt

9. Other communication / connection articles by authors in the Carer Mentor community network:

1. Inside the Life of an Alzheimer’s Home Caregiver By Sammie Marsalli

• How To Connect

• How I Learned To Be A Caregiver For My Wife With Alzheimer's. Sharing Experiences To Help Alzheimer's Home Caregivers Of Loved Ones.

2. The Dementia Chronicles By

• Conversations with Someone Who Has Dementia: An exercise in patience

3. Searching for Words by Patricia Paddey

• Why "Searching for the Words"?

4. Only The Jodi By

• "I'll be Right Back" Means I Love You. Her smile breaks me, then it heals me.

5. Contemplations By

• “The dementia mind” Dementia Diaries

• “How dementia blurs the basics.” Dementia Diaries

Over to you…

• Do you have a strategy or tip you can share that helps you connect with your loved one who has dementia?

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Carer Mentor joins Alzheimer’s Disease International in raising awareness of dementia, challenging the surrounding stigma, and supporting all those affected by it. (Diagnosed, undiagnosed sufferers of dementia and all those supporting and caring for them)

You can join the campaign by using the resources here.

The following information has been taken from the Alzheimer's Disease International (ADI) website.

ADI is the international federation of over 100 dementia and Alzheimer associations from around the world and is in official relations with the World Health Organization (WHO). ADI’s vision is prevention, care and inclusion today, and cure tomorrow.

Globally, understanding and knowledge about dementia remains low, a finding amplified in ADI’s previous World Alzheimer Reports.

Strikingly, 80% of the public and 65% of health care professionals still wrongly believe dementia is a normal part of ageing.

Often, this is underpinned by a reticence to ask questions and seek out information, advice, and support.

Let’s tackle this reservation, reluctance and fear and encourage people to ask about Alzheimer’s, to ask about dementia. #AskAboutDementia #AskAboutAlzheimers.

Let’s change perceptions and normalise asking questions and learning more about this condition that impacts over 55 million people globally and their carers.

Key facts to share about Dementia:

• Dementia is not a normal part of ageing.

• Evidence suggests that when people with dementia and their families are well prepared and supported, feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment.

• In many parts of the world, access to receiving a diagnosis, as well as support following a diagnosis, is either insufficient, difficult to access, or not available at all.

• National Dementia Plans are the best tool governments have available to tackle dementia.

• Alongside drug treatments and medical supports, social support, inclusive dementia friendly design, social activities, reminiscence sessions, rehabilitation and respite, are all vital to maximise the independence of people living with dementia and their carers.

Did You Know

The Institute of Health Metrics and Evaluation have published estimated prevalence figures for most countries now and in 2050.

Click here to see the predictions for your country

Statistics that hit home

• There are over 55 million people around the world living with dementia.

• Someone develops dementia every 3 seconds.

• The number of people living with dementia is predicted to rise sharply to 78 million by 2030 and 139 million by 2050.

• Dementia will be the 3rd leading cause of death globally by 2040.

• The economic burden of dementia is US $1.3 trillion dollars every year, a figure that will more than double by 2030.

• 88% of people living with dementia indicate experiencing discrimination.

• More than 90% of carers and respondents from the general public said they would be encouraged to get a diagnosis if a disease-modifying treatment were available for dementia.

• More than 80% of the general public believe that they can change the support provided to people with dementia through their vote.

• Over 50% of carers globally report that their health has suffered as a result of their caring responsibilities, despite expressing positive sentiments about their role.

• 50% of the costs for dementia are related to informal care. Globally, the annual number of unpaid informal care hours provided to people with dementia living at home is the equivalent of 67 million full-time workers.

• Women are most likely to provide care to people with dementia, both professionally and informally, with around two-thirds of primary caregivers overall being women.

• This figure is significantly higher in low- and middle-income countries (LMICs), areas which will account for 71% of the global prevalence of dementia by 2050.

• Two-thirds of people living with dementia are women. In LMICs, 90% of the care for those living with dementia occurs in the home.

World Alzheimer’s Day

World Alzheimer’s Day is on 21 September each year.
Each World Alzheimer’s Day, ADI releases its annual World Alzheimer's Report. This year’s report will focus on rehabilitation.

The Carer Mentor Dementia Anthology shares the experiences of individuals diagnosed with cognitive impairment/Dementia and their caregivers.

You can learn about lived experiences right here:

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What is dementia? ‘Dementia’ describes a group of symptoms that include problems with memory, thinking or language, and changes in mood, emotions, perception and behaviour. Dementia is a progressive disease, which means symptoms may be relatively mild at first, but they get worse over time. There are many types of dementia, but Alzheimer’s disease is the most common. The next most common is vascular dementia.

My father was diagnosed with vascular dementia, following a major hospitalisation in 2015. This was one of the many health issues he had, including congestive heart failure, atrial fibrillation, bladder cancer and rheumatoid arthritis…there’s more, but I think you get the picture.

Dementia is cruel and torturous for the person who has it and their loved ones. Caregiving for a loved one with dementia is a paradoxical, unforgiving mix of emotions and experiences.

Next week, from Monday, 19th May to Sunday, 25th May, it’s Dementia Action Week in the UK, founded by the Alzheimer’s Society.

Can you help raise awareness about Dementia, its symptoms and the need for early diagnosis?

There are resource links below to help you.

This information is sourced from the Alzheimer’s Society Website.

Dementia Action Week is an awareness-raising campaign. Each year, the Alzheimer's Society (UK)1 collaborates with individuals and organisations across the UK to encourage people to take action on dementia.

This year they are focussing on diagnosis and educating audiences on the most common symptoms of dementia.

Click here for a Dementia symptoms leaflet (English and Welsh language)

If you’re worried about yourself or a loved one, complete our symptoms checklist at alzheimers.org.uk/checklist and show it to a GP. Or call our Dementia Support Line on 0333 150 3456 (English-speaking) - Alzheimer’s Society.

Talking to someone about their memory problems

It can be difficult to talk to someone about problems with their memory. Advice to help you start a conversation.

How to offer help to someone with dementia who doesn’t want it

Do you know a person with dementia or memory problems who is refusing offers of help? Here are a few ways to support someone who may be in denial or lack insight about their situation.

Denial can be beneficial, as it can give someone time to process news and how they feel about it.

Victoria’s comment: If you regularly see someone you can understand how well they are managing day to day, their symptoms may have only started to become more apparent to them and others.

In other cases, I’ve friends who’ve been shocked in the changes they’ve seen with a loved one. These situations can be the most emotional contexts, where everyone is frustrated, scared and wondering what’s next.

Whether it’s early on or a big change, I’d urge you to take a deep breath, and lead with listening and observations first. Connecting with empathy can lay an important groundwork of trust.

Create a space for your friend/loved one to share their thoughts at their pace AND start to take notes (literally or just mentally).

• what are the everyday things they're struggling with?

• How do they feel they’re doing? Try to distinguish between their needs and wishes.

I started to curate this Dementia Anthology of personal experiences and resources early 2024. I hope it can be of service to you or someone you know. Thank you to all the writers/curators for publishing their stories.

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The Impact of Dementia

Around one million people are living with #DementiaBehindClosedDoors. We can change that when we act as one, loudly telling our stories to make people in power understand why dementia must be a priority. Join us, share your experiences and make a difference. Share your story: https://www.alzheimers.org.uk/stories

Support Services (UK)

• Dementia UK

• 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

• Carers UK: For unpaid carers with expert information, advice and support. A Carers discussion forum (anonymous participation). Campaigning to make life better for carers

• mobilise 'Together we care and thrive'

• Respite for Carers: Carefree transforms vacant accommodation into vital breaks for unpaid carers

• Age UK

• Carers Trust Young Carers Advice and Support

• MIND Crisis and Listening services If you need to talk right now, there are many helplines staffed by trained people ready to listen. They won't judge you, and could help you make sense of what you're feeling.

Support Services (US)

• Alzheimer Foundation of America

• Memory Cafés Support groups.

• Rosalynn Carter Institute for Caregivers

• Caring Across Generations

• AARP Family caregiving.

• AARP Care Guides

Please remember to ‘❤️’ LIKE the article to guide others to these resources and raise awareness about Dementia and its impact.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

In short, after a career climbing the corporate ladder and 18 relocations across 10 countries, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He 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.

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This reference document is part of The Dementia Anthology.

Explanations of Dementia and its subtypes.

Source: Dementia UK and National Institute of Aging.

Dementia UK

Around 944,000 people are estimated to be living with dementia in the UK, and someone develops the condition every three minutes.

Dementia causes changes in memory, thinking, personality and behaviour, but symptoms vary depending on which type the person has. Understanding the various types of dementia means people can get the right support to help them live better with the condition.

Here’s what you need to know about some of the most common forms of dementia, including Alzheimer’s disease, vascular dementia and frontotemporal dementia.

Who is at risk of Alzheimer’s disease?

Click here for the leaflet. Here is the website with more detailed information

Age is the biggest risk factor for developing Alzheimer’s disease. It affects one in 14 people over the age of 65, and one in six people over the age of 80.

However, it can also affect people under the age of 65 (this is known as young onset dementia).

Understanding Vascular Dementia

Click here for the leaflet. Here is the website with more detailed information.

Vascular dementia is the second most common type of dementia after Alzheimer’s disease.

Lewy Body Dementia

World Lewy Body Dementia Day is January 28th

Lewy Body International: Promotes the awareness & knowledge of Lewy Body Dementia through a network of dedicated LBD organisations worldwide.

The Lewy Body Society (UK) is the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia:

“Lewy body dementia is the second most common type of neurodegenerative dementia in older people. At least 10-15% of all people who live with dementia have Lewy body dementia.”

The Lewy Body Society has worked with the NIHR to produce this programme:

The DIAMOND-Lewy programme was funded by the National Institute for Health Research.(NIHR)

Through the NIHR funded DIAMOND-Lewy (Improving the diagnosis and management of Lewy body dementia) study, evidence – based toolkits were developed for the assessment and diagnosis of Lewy body dementia, and for its management.

These toolkits are designed for use by healthcare professionals who have experience of diagnosing and managing people with dementia, and cover dementia with Lewy bodies, and Parkinson’s disease dementia.
There are 2 assessment toolkits and a management toolkit as follows:

Assessment toolkit for dementia with Lewy bodies, specifically designed for use in memory services

1. Assessment toolkit for Lewy body dementia, specifically designed for use in movement disorder services
2. Management toolkit for Lewy body dementia, for use in all services.

Click here to go to their website that contains the toolkits

Lewy Body & Frontotemporal Dementia by Dr. Trey Bateman

(August 26, 2025) Pat Snyder’s YouTube Channel. Her husband had Lewy Body Dementia.

Frontotemporal Dementia

Click here for the leaflet. Here is the website with more detailed information.

Frontotemporal dementia (FTD) is an umbrella term for a group of dementias that mainly affect the frontal and temporal lobes of the brain, which are responsible for personality, behaviour, language and speech.   

Unlike other types of dementia, memory loss and concentration problems are less common in the early stages.  

FTD is a rare form of dementia affecting around one in 20 people with a dementia diagnosis.  

Dementia UK has a wealth of information on six other types of Dementia. Click on the image below to go to the website and explore these types.

The National Institute of Aging (NIA):

Dementia is an umbrella term used to describe a range of neurological conditions affecting the brain that get worse over time.

Here is a helpful video developed by NIA and a infographic below.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

The website is a hub of practical tools, resources, and insights I’ve researched and used as a global commercial leader, mentor, and caregiver. I hope it can provide you with resources and empathy to support you on your caregiver journey or simply inspire new ideas.

This week is Dementia Action Week (13-19 May 2024), in the UK Alzheimer’s Society.

These are Resources and Articles related to Dementia support.

1. Talking to someone who may have some memory issues

2. How to Communicate with someone who has Dementia

3. Dementia some ideas of what to do when…

4. Dementia the unforgettable impact on caregivers

Connecting with Dementia sufferers

Previous articles have focused on Emotional Agility, Growth mindset, and Misconceptions of Emotions, which are essential for exploring, navigating, and expressing what’s happening inside ourselves.

Dementia sufferers may be less articulate, have issues cognitively processing ideas, or become less able to express what they need or feel. However, like anyone, they do feel and need things. The disabilities due to the disease create an additional wall that, over time reinforces their inability to connect with others.

How can we connect with Dementia sufferers?

While Dad could converse easily, I felt much more than he said. Decoding ‘Dad-speak’, the passive-aggressive moments or self-recriminations became routine. I learnt how to take my cues from him and his mood. Love gave us patience and open-heartedness, but this also constituted a perpetual hypervigilance that syphoned off energy like ten fire hoses in a rager.

The ‘doing’ of caregiving and interfacing with stakeholders is exhausting and stressful. However, the harder part is deciphering the needs of someone who has difficulty expressing themselves and their emotions due to illness or is simply less adept at articulating their needs and feelings. Every situation, personality, and context is unique and beholden to dynamics that evolved over years of familial/friendship relations.

Caring with empathy encourages us to connect with our loved ones to help them express difficult emotions, and it doesn’t have to be through words. Music, art, photos can facilitate a connection.

The trouble is that caregivers are the human translators and facilitators for their loved ones. It requires us to be open vessels to respect, receive, bear witness to, and even carry those emotions. This emotional communication is fraught and heartbreakingly bittersweet and can place an additional burden on our wellbeing. It’s no wonder caregivers burn out. It’s no wonder that caregivers have difficulties expressing the full amplitude of what they’re feeling to others who are less fluent in the ‘caregiver’ language.

Caregiver-empaths who translate for others can be lightning rods of emotions. We may ground others, but the shock can fry our souls, especially with repeated emergencies and crises. This is why it is important to learn emotional agility and connect with other caregivers and your community. Caregivers need empathetic support.

Introduction to Naomi Feil and Validation Therapy

I discovered Naomi Feil's work only recently.

This video shows a lady with advanced Alzheimers who uses repetitive hand motions to communicate. This may be too difficult for some readers to watch.

The lady singing is Naomi Feil ‘the godmother of person-centered care’ who developed the Validation method.

In this June 24 2022 interview with Naomi Feil, on her 90th birthday, she explains the need for Empathy and empathetic listening. Many people think that the the older person is losing control, but they are expressing themselves and need someone to listen. Without this active listening an older person may stop expressing themselves and their emotions and retreat into themselves. ‘A living dead person, a zombie’. If someone really listens then the older person can be relieved of their emotions and feel heard.

In this interview Naomi Feil describes ‘Validation Therapy’

The caregiver/validation therapy practitioner clears out their own emotion and honestly removes how they are feeling so that they can be open to feel what the older person is feeling.

When you centre yourself, breathe out and through your emotions you can meet that person where they are, in what they are feeling and accept them just the way they are. When you do this you can help the person meet their basic needs: to feel love, to feel active/useful and respected and enable them to fully express whatever they are feeling. You can help them feel seen, feel respected and to know they’ve been heard and understood. There is an underlying need or reason behind the literal words or action that they are expressing.

Naomi Feil died on 24 December 2023 at her home in Jasper, Oregon at the age of 91. Here is the New York Times Obituary. An excerpt of the article:

Mrs. Feil was a 24-year-old social worker, convening a group of patients diagnosed as “senile psychotic,” when a staff psychologist at the Montefiore Home for the Aged in Cleveland laid the foundation for what would become the method she called validation therapy.

“He taught us when feelings are ‘validated’ they are relieved,” Mrs. Feil explained on the website of her nonprofit Validation Training Institute in Pleasant Hill, Ore. “‘You are validating your residents, helping them release their pain.' When social work students asked me what I was doing, I answered: ‘Validation.’ And so a new way of relating was formed.”

Her method calls for caregivers to empathize with disoriented individuals in an effort to reduce their stress and support their dignity, rather than try to impose reality on them.

…As she refined her methods, she founded the nonprofit Validation Training Institute in 1982. She directed it until 2014 when she was succeeded by Ms. de Klerk-Rubin, her daughter.

“She was a pioneer in this area of person-centered dementia care,” Sam Fazio, the senior director of quality care and psychosocial research at the Alzheimer’s Association, said in a phone interview. “What’s key in connecting with a person with cognitive impairment is to meet them in their reality instead of expecting them to meet us in ours.”

Her theory, like a related one called therapeutic deception, was not without its critics. The main objection is that it condones lying. The British Alzheimer’s Society has said that “we struggle to see how systematically deceiving someone with dementia can be part of an authentic trusting relationship.” Others argue that lying, or accepting a patient’s delusion as reality, is justified when it is in the patient’s best interest.

There is still no consensus.

The Validation Training Institute

Validation was a maverick concept back in the 1970s when Feil first proposed that caregivers ‘step into the world of the disoriented old-old’ and stop using reality orientation, diversion or lying. Her books, and workshops (she led over 1000 in the U.S. and 1000 in Europe) spread her messages: understand that there is a reason behind the behavior of disoriented older adults and use empathy to accompany them in their final stage of life. Her work inspired a new generation to work “person-centered.”

Naomi Feil founded her non-profit organization, the Validation Training Institute (VTI) in 1982. VTI  is honoring her final wish, to continue her legacy with the same energy and passion that she demonstrated over 60 years.

So, how does validation therapy work?

According to Naomi Feil’s book, The Validation Breakthrough, validation therapy follows ten basic principles: 

1. All people are unique and must be treated as individuals.

2. All people are valuable, no matter how disoriented they are.

3. There is a reason behind the behavior of disoriented old-old people.

4. Behavior in old-old age is not merely a function of anatomic changes in the brain, but reflects a combination of physical, social and psychological changes that take place over the lifespan.

5. Old-old people cannot be forced to change their behaviors. Behaviors can be changed only if the person wants to change them.

6. Old-old people must be accepted non judgmentally.

7. Particular life tasks are associated with each stage of life. Failure to complete a task at the appropriate stage of life may lead to psychological problems.

8. When more recent memory fails, older adults try to restore balance in their lives by retrieving earlier memories. When eyesight fails, they use the mind’s eye to see. When hearing goes, they listen to sounds from the past.

9. Painful feelings that are expressed, acknowledged, and Validated by a trusted listener will diminish. Painful feelings that are ignored or suppressed will gain strength.

10. Empathy builds trust, reduces anxiety, and restores dignity

A last word..

I hope through the emotional agility articles we can each learn more about emotional granularity and expressing ourselves, so that we can offer others empathy and sustain our own mental wellbeing.

Person-centered care, for me, is part of our language of being human. I hope we can each modulate how we communicate with each other, to truly listen to each others needs.

P.S You may need tissues while watching this: Vicky McClure and the Dementia Choir Sings again (BBC Documentary October 2022)

Here is a link to their website

Thank you dear readers for all your support. I hope you’ll subscribe if you haven’t already. If you can, I’d appreciate your support through a paid subscription, monthly or via a permanently discounted annual subscription.

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Please share the information to help those who need it. Thank you!

Share Carer Mentor: Empathy & Inspiration

Nature’s water flows through the seasons, inspiring and connecting us in this second collaborative article of Memories and Music.

1. Click here ‘Downstream’ Fogchaser's creative talents in music and prose:

'Here in Oregon, winter’s grip is loosening; soon the creeks will be brimming with snowmelt from nearby mountains. It’s hard to think of this annual thaw as anything but symbolic — a distinct softening of the hard edges that form around us in the darker months. The suggestion of warmth whispered by the sun’s slow shifts, the sounds of snowmelt, and the soft blooms of early Camellias herald yet another beginning.

I wait, eagerly, downstream.'

I recommend subscribing to Fogchaser. His creations offer calm and a big exhale. Thanks, Matt!

2. - at ‘Harmony and Havoc: Tales From a Former Wanna-be Rockstar’ ‘Dead Trees Singing’

A thunderstorm crescendo leads to 'Dead Trees Singing'. It’s not a gentle stroll on a trail. Through this awe-inspiring trip through a thunderstorm, Camille brings us back to the wonder and awe nature has, even when we think it’s dead and gone.

3. has become a new source of music discoveries for me. My favourite find is 'A Storm On A Summer Day'. Thank you, Songletter! I recommend exploring and subscribing to the publication to see what else you can find:

4. at Hearts Quest shares reflection piece full of spirit, music, wonder and connection with nature. Christine sings to the ocean. Thank you for inviting us to the ocean-shore, Christine.

Since I published Music Memories on February 28, it feels like I've stepped through a door into a whole new realm of music on the Substack platform.

Thanks to Fogchaser, I'm now connected to Niamh Fahy. She and her husband compose pieces that articulate feelings in a way I haven't experienced before. Please listen to 'Endless play'

5. ‘Infinite Possibilities’. by Niamh Fahy.

Niamh's composition sounds like 'Infinite possibilities' the cusp of opportunity.

The hope, opening ourselves to the possibility, is what I heard and so it links beautifully with Janet Ridsdale's post about Anja.

6. at Now What? With JR. ‘Anja. Knitting The World Together One Stitch At A Time’

When I read inspiring stories like these: a 13 year old who can incisively capture empathy and Inspire the world to think differently about Peace, I’m hopeful and inspired.

There are infinite possibilities to connect, support each other, and make a difference, if a thirteen year old can do it imagine what we can do!! Corny? Yes, but so true!

From nature to the infinite possibilities of connection.

What meaningful act can you do this week to connect with someone and lift them up?

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Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

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Dementia UK’s video Lifestory (November 2021) shares how all our senses can enable us to reconnect with loved ones. This empathetic connection goes beyond dementia, enabling intergenerational communication and comforting those who feel isolated and alone.

Can you share ONE OF YOUR MEMORIES triggered by a smell or perfume?

IN CAPS: Give the memory a title. ‘The time when…”

A short paragraph describing why it’s a comforting smell, the memory, and a few details, e.g., who, what, when, and where.

Where or how could your loved one reproduce the smell? For example, if you have a bottle of perfume, or can they cook something?

The Idea: Music memories and perfumed memories can accompany a curated photo album

THE INSPIRATION: This thread can offer ideas to caregivers caring for loved ones with Dementia.

If you’re inspired to write an article, let me know!

Dear Reader,

When we were caring for Dad, having a calm, stable care routine offered him the comfortable reference points he needed to navigate his waking hours. It wasn’t the hands of a clock that prompted his actions. Our hugs and gentle nudges oriented him in space, time and connection. He didn’t always like the nudges! His main health issues of bladder cancer and congestive heart failure exhausted his tired body, and dementia sometimes robbed him of his ability to frame his thoughts. So, there were moments of distress, shouts or tears, but we also shared moments of deep connection and love, made all the more poignant and meaningful because of …well, everything that was going on!

We were propelled forward by many things that were out of our control (symptoms, medical appointments, emergencies, etc.)—surviving. We held onto the small, precious moments of laughter, reminiscing together, and listening for deep, resonant snores of peacefulness—thriving in the small moments.

We’re generally not trained or seek to learn more about these topics until we have to. So, there’s a huge tsunami of information when you face a medical crisis or diagnosis. When Dad was first diagnosed with vascular dementia, I googled and researched a lot, and well-meaning people offered a lot of unsolicited advice.

These short videos offer practical tips. They’re here alongside other resources that have helped me. I would advise you not to watch everything all in one go; dip in and out at your own pace. Try to be mindful of your feelings and energy.

Take care, big empathetic hugs.

Victoria

Introduction:

Dementia UK has released several informative videos (November 2, 2021 & January 17, 2023) on dementia-related topics. A few friends were looking for information to help them so I found the Youtube videos and links.

Table of Contents

1. What to do when a person with dementia is distressed.

2. Delirium (sudden confusion).

3. What to do when someone doesn't recognise you anymore.

4. Looking after your relationships when you care for someone with dementia.

5. Jude's story - living life with young onset dementia.

Dementia UK Website and nurse support:

Dementia UK: Click here

Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

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1. What to do when a person with dementia is distressed

When a person with dementia becomes distressed, it is often because they are trying to communicate something to you. Admiral Nurse Paulette Winchester-Joseph suggests techniques that can try to prevent distress in the first place as well as methods for promoting calm in the moment. November 2, 2021.

Read more here: Coping with Distress.

2. Delirium

Delirium is a sudden onset of confusion that can occur more commonly in older people, whether or not they have dementia. In this video, we provide some tips about what delirium is, how you can recognise it, what causes it, and what you can do about it.

Read more here on Delirium (sudden confusion).

The following advice is taken from the website:

Delirium can be serious, so it’s vital that the person receives  medical assistance as soon as possible.   

If the person is at home, contact their GP and ask for an urgent appointment. If they are in hospital, tell the nurse or doctor who is looking after them. If they are in a care home, tell a carer. 

If you think the person is seriously or suddenly unwell, take them to A&E or call 999 for an ambulance (in the UK): in rare cases, delirium or its underlying causes can be life-threatening.

You could also try these ideas to try to ease the person’s distress: 

• keep calm and reassure them – you might need to remind them who you are, where they are, and what day it is 

• speak in short, simple sentences  

• try to distract them with activities like watching TV, listening to music or looking at photos  

• encourage them to eat and drink, for example by offering favourite foods 

• help them find the toilet if needed  

• stay with them if they’re walking around in case of falls 

• keep a dim light on at night 

• avoid disagreeing with them, even if they’re saying unusual things – instead, try to change the topic of conversation 

3. What to do when someone doesn't recognise you anymore.

Chief Admiral Nurse and CEO, Dr. Hilda Hayo. November 2, 2021

Read more here on Dementia and the lack of recognition.

4. Looking after your relationships when you care for someone with dementia

Vic Lyons speaks on how to look after your relationships when you care for someone with dementia. November 2, 20221.

Looking after yourself when you’re looking after someone with dementia.

5. Jude's story - living life with young onset dementia Jan 17, 2023

Jude was diagnosed with young onset Alzheimer's disease in 2021 aged 57. In this film Jude, her partner Becky and best friend Johnty talk about how she has continued to live a full and active life since her diagnosis and about the support they've received from Dementia UK, and what it has meant to them.

Read other personal stories.

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Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Below are resources and recommendations I’ve shared many times. There are descriptions, explanations, support tools and tips for both the caregivers and the sufferers of Dementia.

Themes, descriptions, and symptoms of Dementia may appear similar for everyone. However, I believe every experience each sufferer and each caregiver lives through is a unique, rollercoaster journey because every person and each relationship is unique.

My father had vascular dementia. In addition to the cornucopia of illness he suffered. The dementia robbed him of his ability to reason from A to B to C.

Before the significant hospitalisation in 2015, he had soldiered on and survived various operations and treatments. He was a proud, charismatic, gregarious and somewhat mischievous man who taught himself twelve or thirteen languages and cared for his patients as a consultant geriatrician until his rheumatoid arthritis forced him into retirement early. The irony, right?

Several events contributed towards his vascular dementia. Looking back, the watershed moments were clumped around 2015-2016. From soldier, protagonist to defender, trying to survive.

In the worst moments, he swung from passive-aggressive outbursts, shouting at us his ‘jailers’ - who were preventing him from independently doing things and, moments later, crying with frustration and self-recriminations.

‘Tennis ball in the throat’ and ‘nails in palms’ were fulcrum-reaction moments. Sometimes, we cried together. Other times, I had to grit hard, holding myself in check while I quietly and slowly comforted and reassured him.

To others, he appeared fine. He revved up his energy to put on a front; he used eye contact and signals for me to cover the ‘gaps’; he used humour to gloss over a mistake; he constantly asked others about themselves and their family to divert attention away from his inabilities.

2 phrases I came to hate:

The latter was said repeatedly over the course of 15-20 minutes. It hurt not because ‘he wasn’t getting on with things’ but because it repeatedly signalled that Dad had no real sense of time. It didn’t matter how long he sat there, it hurt that he was dissociated from things happening around him. [Due only in part to the dementia; mostly a reflection of his overall health]

I used to think of myself as a ‘Lady in waiting’, hovering, waiting, anticipating his needs and primed to read his cues for help. Caregivers become adept and attuned to the needs of their loved ones. This translates into constant hypervigilance, watching for cues and holistic changes.

I’ve included a few video documentaries that portray the struggles of sufferers and caregivers. [Caveat the Louis Theroux video is stark and painful about the real long term effects, so if in doubt, don’t watch it]

If you’re feeling a similar strain, I recommend contacting others for support. Connect with other caregivers. Friends and family are great, but they may not ‘get it’.

I found Carers UK was the most useful Forum for me. Why? Here are some helpful criteria to use:

• It’s anonymous

• There’s always someone online in the community (carers don’t get much sleep!)

• Mutual empathy, appreciation and no preaching

• Similar to peer mentoring or mentoring in general, carers share tips, experience and compassion AND discuss what others find taboo around poop, shit, incontinence and anger, frustration and helplessness.

• There are weekly online meetings ‘Cuppas’

• There are experts at Carers UK who can be called (helpline).

• Anyone can flag concerns for a member to the support team

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Here are the resources:

Organisations: Global, UK, Europe, USA

Resources incl. online courses, publications, and video documentaries

Other publications

Global Organisations

World Health Organisation: What is Dementia

WHO Dementia: News, Publications, Infographics and Videos

9 May 2019 WHO (PDF) Support Manual for Dementia:

UK Organisations

NHS: What is Dementia

Dementia UK: Click here

Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

Alzheimer’s Society (UK) https://www.alzheimers.org.uk/about-dementia/types-dementia

Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here

The essential guide when you’re caring for a person with dementia

When someone close to you is diagnosed with dementia, it can be difficult to know which way to turn. Our comprehensive guide – Caring for a person with dementia – can be your go-to companion. 

It’s packed with information and advice. We have consulted with many carers, who have told us about the reality of supporting someone with dementia. Their experiences and insight have shaped this guide. 

European Organisations

Alzheimer Europe Click Here There is a directory of organisations underneath this ‘umbrella’ organisation.

US Organisations

Centers for Disease Control and Prevention: Click here

Alzheimer's Association: Click here

at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.

Click here to go to the Helpline page on the website.

Canadian Organisations

Alzheimer Society: Click here

Resources

2015 BBC Documentary on Dementia: A Month in the Life. (Duration 13:01 minutes) Wendy, Keith and Christopher are three of more than 500,000 people with dementia in the UK living at home. For the BBC's Victoria Derbyshire programme, they filmed parts of their lives over a month

Victoria Notes:

5.20 Biggest Fears: Becoming someone else, Loss of Independence, Not recognising the 2 people that mean so much to her.

7.38 Early morning ritual in the bathroom: Little strategies that help me.

9.20 Breakfast: honey and then butter, it doesn't matter which way they go on the toast

Keyword moments:

• The fog: 'heart thump', 'lose my words', 'frustration and anger at not being able to better deal with it.’

• A big fear is the loss of independence.

• Sufferers and caregivers develop bespoke strategies to cope and move forward in their daily lives and specific strategies to remember things.

• Sufferers may lose words but always remember how the event/conversation/person made them feel.

Louis Theroux. Extreme Love: Dementia

26 April 2012 BBC Documentary. Louis Theroux. Extreme Love: Dementia. In USA. (Duration 59 minutes) .

Victoria notes: This is painful to watch in places partly because Louis is educating himself and viewers on the sufferer and caregiver interactions. It is a heart-wrenching journey and testimony. The evolution of his awareness and understanding is driven home by the stark examples of memory loss (on the 4th floor) and interviews with the family. Caveat: For caregivers of Alzheimer's and dementia sufferers, this may be too much to watch.

Documentary Introduction: Louis travels to Phoenix, Arizona - the capital of dementia care. He spends time at Beatitudes, a residential institution, and also with those looking after loved ones at home to try to understand the struggle of living in a world of encroaching shadows - and of keeping relationships alive in circumstances that can be among the strangest and most challenging imaginable. https://www.bbc.co.uk/iplayer/episode/b01gvt26/louis-theroux-extreme-love-series-1-2-dementia

June 2 2023. NHK World -Japan Documentary. (Duration: 49:05) A neuroscientist with a mother diagnosed with Alzheimer’s disease must balance her role as daughter and caregiver and that of a scientific researcher looking for answers. Click here

May 5 2019. 60 Minutes USA Frontotemporal Dementia (FTD) (Duration 14:05 minutes) Click here. This is not Alzheimer's, where memory is lost. FTD is the number 1 form of Dementia for those under age of 60. Sufferers lose recognition of other people OR of themselves. Speech, personality, and judgement are affected.

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If you’ve found a resource that has helped you, please share it in the comments.

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

Subscribe now