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Books by people with dementia

For our final day of Dementia Awareness Month, and to further celebrate the voices of people with dementia, two DAI members, Christine Thelker and Kate Swaffer have created a list of books written and published by people with dementia.

In contrast to the vast number of books written by family members or care partners, we could only find about 3 dozen written by people with dementia. However,  they are a unique and honest view into the real lives, of real people diagnosed with dementia.

If you know any that have been missed, please let us know!

Listed in chronological order, to highlight how long people with dementia have been speaking out:

My Journey into Alzheimer’s Disease, by Robert Davis, 1989

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowin, 1994

Losing my Mind: An Intimate Look at Life with Alzheimer’s, by Thomas DeBaggio, 2002

When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s, by Thomas DeBaggio, 2003

Just Love Me: My Life Turned Upside Down by Alzheimer’s, byJeanne Lee, 2003

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden, 2005

Alzheimer’s from the Inside Out, by Dr Richard Taylor, 2006

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowen, 2011

Silent Voices: My Battle With Alzheimers Rages on, by Norman McNamara, 2011

Who will I be when I die? , by Christine Bryden, 2012

From the Corner Office to Alzheimer’s, by Michael Ellenbogen, 2013

On Pluto: Inside the Mind of Alzheimer’s: 2nd Edition, by Greg O’Brien, (1st Edn 2014, 2nd Edn 2018)

Nothing About Us, Without Us!: 20 Years of Dementia Advocacy, by Christine Bryden, 2015

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46, Christine Bryden, 2015

What the hell happened to my brain?: Living Beyond Dementia, by Kate Swaffer, 2016

Diagnosed With Alzheimers Or Another Dementia: A practical guide to what’s next for people living with dementia, their families and care partners, by Kate Swaffer & Lee-Fay Low, 2016

Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia, by Kate Swaffer, 2016

Dementia Activist: Fighting for Our Rights, by Helga Rohra, 2016

Five minutes of amazing: mjourney through dementia, by Chris Graham, 2016

The Lewy Body Soldier: The Lewy Body Soldier, by Norman McNamara, 2016

Walk the walk, Talk the talk, by Keith Oliver, 2016

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, B. Smith, Dan Gasby, et al., 2016

The Dancing Dementia Dude: An Urgent Conversation Between Dementia Folks, Care Partners and God, Dallas Dixon, 2017

Memory’s Last Breath: Field Notes on My Dementia, by Gerda Saunders, 2017

“Was zum Teufel geschieht in meinem Hirn?”: Ein Leben jenseits der Demenz, by Kate Swaffer, 2017

Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain (How to Die Smiling Book 1), by Jarem Sawatsky, 2017

Somebody I Used to Know: A Memoir, by Wendy Mitchell, 2018

Will I Still Be Me?: Finding a Continuing Sense of Self in the Lived Experience of Dementia, Christine Bryden, 2018

A Doctor’s Personal Journey of Hope, by Dr Jennifer Bute, 2018

Talking Sense: Living with Sensory Changes and Dementia, by Agnes Houston, 2018

Dear Alzheimer’s: A Diary of Living with Dementia, by Keith Oliver, 2019

Dementia Strategies, Tips, and Personal Stories, by Myrna Norman, 2020

For this I am Grateful: Living well with dementia, by Christine Thelker, 2020

Slow Puncture: Living Well With Dementia, by Peter Berry, 2020

Sean’s Story: My five tips for living with frontotemporal dementia, by Sean Kelly, 2020

Dignity & Dementia: Carpe Diem: My journals of living with dementia, by Mary Beth Wighton, 2021

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There are now many books which include chapters authored by people with dementia, e.g.

Dementia Rehabilitation, 1st Edition: Evidence-Based Interventions and Clinical Recommendations, Edited by Lee-Fay Low & Kate Laver, chapter 1, Rehabilitation: a human right for everyone, by Kate Swaffer.

The Routley Handbook of Disbility Activism, Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, chapter 10, Dementia as a Disability, by DAI members, Kate Swaffer, Brian LeBlanc, Peter Mittler. This book was the 2019 Outstanding Handbook – Social Sciences – Award Winner.

 

 

 

 

 

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

The DAI New Membership Criteria

Dementia Alliance International (DAI) continues with our series of blogs and news as part of our Dementia Awareness Month activities, and today, we are pleased to announce our newly adopted membership criteria.

When DAI launched on 1 January 2014, our membership criteria explicitly stated that to qualify for membership, the applicant needed to have a medically confirmed diagnosis of any type of dementia, which excluded members with a diagnosis of Mild Cognitive Impairment (MCI).

As with all health conditions, research changes things such as the diagostic criteria for a condition, as well as the clinical practice guidelines. Over a period of more than five years, the board and membership has discussed changing this criteria, and after much consideration, and years of reviewing it with dementia experts, academics and clinicians, we have finally moved to update a By Laws in line with the latest in terms of a diagnosis of dementa, as well as to  increase inclusion.

Many experts had previously advised DAI that MCI does not always lead to dementia (some still say, as few as 20%), and hence this group did not meet the original DAI membership criteria. However, others had recommended DAI should have allowed their membership regardless of this, as no-one else is providing support for people in the diagnostic process or with MCI.  We always wanteded DAI to be of, by and for people with dmentia, and also to ensure that people without dementia were not able to take over, as had happened to other self-advocacy groups.

Our motto is still, “Nothing about us, without us”.

On September 14/15, 2021, the DAI board unanimously voted to change ARTICLE II – MEMBERSHIP Section 1 of our By Laws to the following:

ARTICLE II – MEMBERSHIP Section 1 of the DAI By Laws now says:  

Section 1 – Eligibility for membership: Request for membership shall be open to any person living with dementia that supports the Vision and Mission of the organization.

Membership of Dementia Alliance International is free and is open and exclusive to anyone with a medical diagnosis of any type of dementia – Mild or Major Neurodegenerative Disorder.

Membership is granted after the completion and receipt of the electronically submitted on-line request or a written membership request provided to an active member.

Membership may be denied or revoked at any time if it is determined that an individual presents potential risk to others in the organization or to the overall health and wellbeing of the organization itself and the people it serves.

This includes but is not limited to breaches of the member Code of Conduct, and physical and mental hazards such as violence, anxiety and relived trauma [this may include revoking or denying membership of registered sex offenders]. A majority vote of the Board is required for denial or revocation of membership.

Read or download the updated By Laws here.

Bobby Redman, who has recently resigned as a board member and as the Vice Chair of DAI for various reasons, including to take on a national role in another organisation, recently provided the DAI board with the following background and some context to assist us to make this decision.

Background to proposed review

Dementia, as a diagnosis is no longer recognised in the DSM-5, which is the diagnostic manual generally used in the USA, Australia, and New Zealand (the UK use the ICD-10). The official term is now Major or Mild Neurocognitive Disorder (ND) and is therefore a stages approach which would previously have been called early-stage dementia / late-stage dementia.

The term mild cognitive impairment (MCI) that is thrown around by doctors is not a diagnosis, but rather a symptom, think of it like pain, which is a symptom rather than a condition. People may experience some cognitive loss (mild cognitive impairment), but it is only as further deterioration occurs, that it meets criteria for mild or major ND.  

The problem is many people sit with a diagnosis of MCI for years, because too many doctors fail to recognise the difference between MCI and Mild ND, often using the term interchangeably.

If cognition continues to slip, and functioning is declining, it meets the criteria for MILD Neurocognitive Disorder, which then naturally progresses to Major ND over variable lengths of time. There is no Moderate ND and the only difference between Mild and Major ND is the severity of symptoms and the level of impact on independence in everyday activities, which as we all know should be on a sliding scale. We all experience good and bad days – some foggy, some a bit clearer; some days when we can complete activities better than other. Only a few of our DAI members would meet the criteria for Major ND, which would mean that we would be unable to function independently. Most of us whilst not meeting these criteria still require some support or strategies to be able to complete some everyday tasks; we would at this stage be diagnosed with Mild ND, with a specifier such as Alzheimer’s Disease; Frontotemporal lobar degeneration (FTD), due to multiple aetiologies (what we know as Mixed Dementia); Unspecified (what too many people sit with) etc.

Join DAI for free here.

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Read the DAI 2021 Global Report

NEWSFLASH: DAI GLOBAL REPORT 2021

Valuing the advocacy of people with dementia: moving dementia out of the shadows

DAI is pleased to launch a new 2021 Global Report on World Alzheimer’s Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.

“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research.  However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.

Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some  of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued.”

We have added the Table of Contents as a way of quickly highlighting what is inside our publication.

Table of Contents

About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
– Involvement as a right
– Involvement which leads to better outcomes
– Involvement which brings personal benefits
Examples of International Leadership in Involvement
– UK- DEEP
– Australia- Cognitive Decline Partnership Centre (CDPC)  
– Ireland- Irish Dementia Working Group
– Scottish Dementia Working Group
– United States- Early-Stage Advisory Group
– Japan- JapanDementia Working Group
– Ontario Dementia Advisory Group (ODAG)
– European Dementia Working Group
– Alzheimers New Zealand and Alzheimers NZ Advisory Group
– Dementia Advocacy Canada (DAC)
– Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
– Appendix 1: Additional resources and practical guides on involvement
References
Endorsements

Also available to download on our website publication page.

About the author:

Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development.  This paper was completed as independent work separate to her other roles.

Ellen is currently the CEO of Down Syndrome Australia and  is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer’s Australia).  She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.

Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer’s Australia when this committee was founded.

Suggested citation:

Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.

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Watch now: Updates In Precision Medicine and Protocols for Dementia

We are pleased to highlight this #DAI webinar presentation during Dementia Awareness Month, which was a recent discussion style presentation by Dr Nate Bergman was an opportunity to hear about the latest findings in Precision Medicine & Protocols for MCI & Dementia. #WAM2021 #DAM2021 #KnowDementia

Dr Nate Bergman DO, has been passionate about proactive, preventive, and participatory medicine since his days as a research fellow at the NIH. He completed a fellowship in geriatric medicine at the Cleveland Clinic with emphasis on the aging brain and body. Prior to his current position at Kemper Cognitive Wellness, he co-developed the Cleveland Clinic Center for Functional Medicine’s program for cognitive impairment.

When not in the office, he hosts and produces the Evolving Past Alzheimer’s podcast, dances, ponders the mysteries of the universe, but mostly enjoys time with his wife and their five children.

This discussion style presentation will primarily be about the latest findings in Precision Medicine & Protocols for MCI & Dementia. Dr Nate Bergman is absolutely convinced that Alzheimer’s and other brain diseases are generally treatable and reversible. Early translational evidence is supports this belief.

Dr Nate Bergman hosts the Evolving Past Alzheimer’s show, which was was born out of both personal experience and frustration with the current state of affairs in medicine. After a short stint in performance art, several years in spiritual retreat and study he embarked on a career in medicine. Nate opted to become a doctor of osteopathic medicine because of the profession’s acknowledgment of the multidimensional nature of humankind, i.e., physical and spiritual beings.

A great number of DAI members have also been convinced that a lifestyle approach, including with a focus on the arts to a diagnosis of dementia is closest they have to hope, and even if not a cure, it will improve our quality of life. This is also the reason DAI started our Brain Health Hub and twice monthly meetings, many years ago, for members and any others. Please send in questions in advance if you have them.

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A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

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Seven years of DAI advocacy by Amy Shives

On January 1, 2021, DAI turned 7! We were delighted to host a virtual cafe to celebrate our 7th birthday, and had a number of planned and impromptu speakers. Amy Shives, one of our co-founding members, spoke about our seven years, from her perspective as a co founder and long time dementia-advocate.

We are thrilled to share it today, as part of our Dementia Awareness Month series of (almost daily) blogs, to continue to highlight the voices of poeople with dementia, as well as DAI’s critical role in local, national and global advocacy.

In this video, she talks about the value of the DAI Peer to Peer suport groups, and how important these groups have been in normalising the experience of dementia. Any also says, that she believes being with others living with dementia has  saved her life.

Thank you Amy!

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By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

Musings for Dementia Awareness Month by Dennis Frost

DAI member, Dennis Frost has shared some wonderful musings with us for Dementia Awareness Month, inspired by the recent poem by another DAI member Thomas Ong and the works of many of our kindred living with dementia.  He wanted to share a couple of works that give him motivation and inspiration to speak up.

The first is a work by William Blake from 1783. It is a poem intended for a dramatic piece of King Edward the Fourth. I will often read to myself before I stand to speak publicly and carry it with me for inspiration.

O for a voice like thunder, and a tongue
To drown the throat of war! – When the senses
Are shaken, and the soul is driven to madness
Who can stand? When the souls of the oppressed

Fight in the troubled air that rages, who can stand?
When the whirlwind of fury comes from the
Throne of God, when the frowns of his countenance
Drive the nations together, who can stand?

When Sin claps his broad wings over the battle,
And sails rejoicing in the flood of Death;
When souls are torn to everlasting fire,
And fiends of Hell rejoice upon the stain.

O who can stand? O who hath caused this?
O who can answer at the throne of God?
The Kings and Nobles of the Land have done it!
Hear it not, Heaven, thy Ministers have done it!

The second work is another piece of classical literature. Its from Hamlet –by William Shakespeare circa 1600.  I personally think it’s the most powerful piece that old Bill Spearshaker ever wrote.

I have of late—but wherefore I know not—lost all my mirth, forgone all custom of exercises, and indeed it goes so heavily with my disposition that this goodly frame, the earth, seems to me a sterile promontory; this most excellent canopy, the air—look you, this brave o’erhanging firmament, this majestical roof fretted with golden fire—why, it appears no other thing to me than a foul and pestilent congregation of vapors. What a piece of work is a man! How noble in reason, how infinite in faculty! In form and moving how express and admirable!

In action how like an angel, in apprehension how like a god! The beauty of the world. The paragon of animals. And yet, to me, what is this quintessence of dust? Man delights not me. No, nor woman neither, though by your smiling you seem to say so.Like most people I studied Shakespeare at school, but his words had no meaning then, it was only when I heard them rendered in the musical Hair, did they stand out. Now many years later e his words summarise so much of what it is like living with dementia.

Finally a more recent poem by Max Ehrmann from 1927. It became an anthem of my generation and again inspires me.

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

And finally, words from Mr Spock…

Live Well and Prosper

 

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How people with disabilities due to dementia are marginalised

We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.

On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;

“From isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization”

How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?

Phyllis Fehr

As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.

These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.

I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I  can no longer care for myself.

Some people with Alzheimer’s  disease [or other dementias] are unable to understand what’s happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community – where the paid care staff are able to learn, have human rights training and have a better understanding of the person they’re caring for. That way they are seen as an individual not as a patient.

Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions.  It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.

The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.

We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.

We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.

Thank you for your time.

Phyllis Fehr, 2021

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Patience by Rose Ong

DAI continues to observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we are delighted to hear from Rose Ong who lives in Canada. Rose is a member of Dementia Alliance International (DAI), and a co-founder and member of The YODA Group, associated with Memory Lane Home Living, a Canadian charity advocating for the rights of dementia affected adults in our community. Thank you Rose.

Patience

A poem written by Rose Ong
on August 15, 2021

I know you think I’m crazy sometimes
And question my judgement
On every decision I make
But if you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

I remember when you were small
When you began to use the words
I would say, or words you heard others use
Most times they fit the context
Of what you wanted to say, but,
Occasionally, they were way off the mark
I would just smile and ask
“Do you know what ‘convoluted’ means?”
Your sheepish grin; another teachable moment

You say, now, that I should know better
When I burn toast at breakfast or forget
My lunch in the microwave or wake at noon
So many repetitive items are jumbled in my mind
And like you were once, I would ask for patience
Because I deserve your forbearance
Not only because I am your Mom or Nana
I am a human being; faulted and flawed
Sheepishly giving you a teachable moment

So when you think I’m crazy sometimes
And question my judgement
On every decision I make
If you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

Rose Ong

Since you’re here, please donate to DAI today

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.