Category Archives: Board Member of the Dementia Alliance International

DAI Members active at the ADI2022 Conference in London


It is an exciting time for many people with dementia from around the world, many of who are also members of DAI, as they are attending and involved at the ADI Conference in London next week, either in person, or virtually.

We congratulate them all, and look forward to reporting back on their sessions.

On Wednesday June 9, ADI and DAI look forward to welcoming all people with dementia and their travel companions or care partners to the conference, which will be held in the Prince of Wales room, during the morning tea break.

Along with key ADI’s Chris Lynch,¬†Jane Cziborra and Paola Barbarino, DAI board members Julie Haydn and Bill Yeates will be there to welcome everyone.

Schedule of speakers with the lived experience of dementia:

Thursday, 9 June

Name Organization Session Time
Kate Swaffer (Session Chair) Co-founder, peer to peer support group co-host & HR Advisor, Dementia Alliance International Dementia Alliance International focuses on inclusive dementia design, Virtual 7:30-8:30am
Helga Rohra

(speaker)

DZNE Dementia Alliance International focuses on inclusive dementia design, Virtual 7:30-8:30am
Helen Rochford Brennan (speaker) Dementia Advocate, Ireland

 

Opening ceremony, 175 suite 8:30-9:30am
Kate Swaffer (moderator)   Risk reduction, prevalence and registries, Duchy suite 11:30am-12:30pm
Keith Oliver

(speaker)

IDEAL programme, University of Exeter Well-being and quality of life, Long room 11:30-12:30pm
Tomofumi Tanno

(Key note speaker)

Dementia Advocate, Dementia Network of Miyagi Plenary 2: The imperatives of diagnosis and treatment, 175 Suite 2:00-3:30pm
Julie Hayden and Nigel Hullah Dementia advocates, 3NDWG Fireside chat in the Exhibition Hall: co design with people with dementia 3:30-4:00pm
Alzheimer’s Society Croydon Singing for the Brain group (performance) Alzheimer’s Society Welcome reception, Lock Bar (roof terrace) 5:45-6:00pm
Donald Baker

(speaker)

Act 2 Studio Works Attitudes, awareness and stigma On demand
Howard Gordon

(speaker)

Deepness Dementia Radio Attitudes, awareness and stigma On demand
Kate Swaffer

(speaker)

DAI & UOW Behavioural and psychological symptoms of dementia On demand
Christine Thelker

(speaker)

Canadian Consortium on Neurodegeneration in Aging Social isolation, loneliness, depression and the consequences for people with dementia and carers On demand

  Friday, 10 June

Name Organization Session Time
Kevin Quaid

(speaker)

Alzheimer’s Society of Ireland Diagnosis, diagnostic tools and cognitive assessments, Duchy suite 10:30am-12:00pm
Emily Ong

(panelist)

Dementia Alliance International Symposium: ADI accreditation: recognition in dementia care standards, Long room 12:15-1:15pm
Natalie Ive

(speaker)

Dementia Australia Advisory Committee Dementia friendliness, 175 suite 3:30-4:30pm
Kevin Quaid

(speaker)

Dementia Research Advisory Team, Ireland Meet the experts by experience, Long room 4:30-5:00pm
Helen Rochford Brennan

(speaker)

Dementia Research Advisory Team, Ireland Meet the experts by experience, Long room 4:30-5:00pm
Emily Ong

(speaker)

Dementia Alliance International Symposium: Women and Brain Health: Risk reduction and opportunities for achieving a brain healthy lifestyle. Sponsored by AARP, Virtual 5:00-6:00pm

 Saturday, 11 June

Name Organization Session Time
Juanita Hughes

(speaker)

Western Brisbane Dementia Alliance Supporting knowledge exchange and learning through bursaries, Virtual 7:30-8:30am
Kate Swaffer

(Key note speaker)

UOW Plenary 5: Risk reduction and prevention: the latest in research and the challenges of bringing new messages to the broader public, 175 suite 9:00-10:00am
Emily Ong

(speaker)

Dementia Alliance International Support for people with dementia, 175 suite 10:30am-12:00pm
William Yeates

(speaker)

Dementia Alliance International and Dementia Australia Risk factors, Duchy suite 10:30-11:45am
Alister Robertson

(speaker)

Dementia Alliance International Well-being and quality of life II On demand

 

 

World Kindness Day

On November 13 it was World Kindness Day, and today, we share an article written by one of o ur new Board members, Dr. David Paulson.  Whilst we are late posting this, we think  it would be wonderful if every day was Kindness Day, as everyone thrives better with kindness.

World Kindness Day

In 1998, World Kindness Day (WKD) was formed as part of the World Kindness Movement, that was formed in 1998, to promote kindness throughout the world and is observed annually on November 13 as part of the World Kindness Movement.

WKD promotes kindness throughout the world. It is observed in the USA, Canada, Japan, Italy, India, Australia and the U.A.E. According to National Today, ‚ÄúWorld Kindness Day presents us with the opportunity to reflect upon one of the most important and human principles. On a day devoted to the positive potential of both large and small acts of kindness, try to promote and diffuse this crucial quality that brings people of every kind together.‚ÄĚ

The purpose of World Kindness Day is to highlight good deeds in the community, focusing on the common thread of kindness which binds us. It has achieved global attention in the two decades since its inception. Events associated with the day have attracted people from every inhabited continent in the form of concerts, dance mobs, and the distribution of ‚Äúkindness cards.‚ÄĚ The purpose of World Kindness Day is to highlight and encourage good deeds in your community. It also serves as a reminder to all those simple acts of kindness have power, and that together, we can all work to create a kinder world. You may wonder how compassion from one person can make a difference. It isn’t easy to comprehend, but every kind act, even the smallest one, creates a ripple effect you can‚Äôt begin to imagine.

The World Kindness Movement launched in Singapore in November 2000. Currently, over 28 countries are a part of the World Kindness Movement group. Observance of World Kindness Day is still unofficial. The World Kindness Movement hopes to obtain official status by the United Nations. If successful, World Kindness Day would join the ranks of recognized days of observance, such as the International Day of Peace, Human Rights Day and World Health Day. In 2019, the World Kindness Movement attained official status as an NGO under Swiss Law.

There are many ways to observe World Kindness Day:

  • Call a relative you haven‚Äôt spoken to in a while
  • Tidy up around your house
  • Pick up trash you see on the ground outside and throw it in a garbage can
  • Hold the door open for someone
  • Chat with a stranger and ask them about their day
  • Pay for a stranger‚Äôs coffee or meal
  • Compliment someone
  • Send a positive or encouraging text to five people in your contacts
  • Surprise someone with flowers
  • Tell a family member or friend you love them
  • Write a note on the receipt at a restaurant for your server
  • Offer to help with someone‚Äôs errands
  • Give a surprise gift to someone you care about
  • Send a kind card or note to a friend

Source: Inspired Kindness World Kindness Day 2021 Your Complete Guide.

These are but a few of the ways to celebrate WKD.

Dementia Alliance International highlights World Kindness Day as we as an organization reach out to others in kindness to offer education, research findings, pathways to healthy management of dementia and social networking to those who also are living dementia. Our online support groups were founded on kindness and compassion. These values are echoed throughout DAI’s literature and official documents.

Why not reach out and show someone a kindness to help commemorate World Kindness Day!

Let’s all be kind on every day.

‚ÄúWe can‚Äôt heal the world today, but we can begin with a voice of compassion, a heart of love, an act of kindness.‚Ä̬† (Mary David)

Dr. David Paulson
DAI Peer to Peer Support Grop Cohost and Board Member

DONATE TO DAI OR PARTNER WITH US

Living with dementia – My Life My Goals Workbook

Image source: Emily Ong

DAI is pleased to announce a recent Alzheimer’s Society UK publication called¬†Living with Dementia:¬†My Life,¬†My Goals. DAI board member Emily Ong from Singapore was one of the team of people living with dementia who collaborated on it.

DAI is proud of the work Emily is doing locally, and globally for all people with dementia.  Thank you Emily, and thanks also to all of the contributors to this important workbook.

Living with Dementia: My Life, My Goals

There is hope that you can live well. A practical guide full of hope to help you set your goals.

 

 

 

DONATE TO OR PARTNER WITH DAI

DAI Board Announces Resignation of CEO Kate Swaffer

The DAI Board Announces Resignation of CEO Kate Swaffer

It is with a mix of sadness and gratitude that the Board of Directors announces Ms. Kate Swaffer’s resignation as Chief Executive Officer of Dementia Alliance International, effective October 30, 2021.

Kate Swaffer is one of the eight co-founders of Dementia Alliance International (DAI), and our long serving former Chair, current CEO and board member of the organization. She has been instrumental in taking the membership from three to 49 countries.

In her years of dedicated service to the organizational mission of ‚ÄúNothing about Us, Without Us‚ÄĚ, DAI was granted consultative status with the Economic and Social Council (ECOSOC) of the¬† United Nations, and has worked closely with the World Health Organization, the NCD Alliance, The World Hospice and Palliative Care Alliance, the International Disability Alliance ¬†where she secured Observer Membership for DAI, and she is still a board member of Alzheimer‚Äôs Disease International and has been a full member of the World Dementia Council, and worked with many other local, national and global organizations.¬†

Kate’s inspiring leadership and warm friendship have not only left a lasting impression on everyone within the organization as well as the new Board Members and the global dementia community, but a permanent legacy at Dementia Alliance International. 

Kate was eligible to serve on the DAI Board, as per the current DAI By Laws, until December 2021 but due to personal reasons, needed to step down sooner. Over the past 18 months, Kate has put in much effort not only to ensure the work she and the other 7 co-founders set out to do, continues, but more importantly, that the services and support DAI provides to and for our members and the dementia community will continue seamlessly. 

We are fortunate to have had this length of time for a transition period, and while we will miss her dynamic presence, enthusiasm, and leadership at the Board meetings, we wish her the best of health and to have more time for her other advocacy pursuits, and for herself and her family.

Kate commenced her advocacy work in 2009, and in 2010 was invited by the CEO of Alzheimer’s Australia, Glenn Rees (now Dementia Australia), to give a speech representing people with dementia, at the first Parliamentary Rally ever held in Australia. She also founded the Alzheimer’s Australia Dementia Advisory Committee in Australia, which held its first meeting in Canberra during World Alzheimer’s Month in September 2013. Kate was the inaugural Chair, and served her full term of four years, stepping back into the role for a few months until a new Chair and Vice Chair were found. 

Glenn Rees stepped down as the CEO of Alzheimer’s Australia to take on the Chair of Alzheimer’s Disease International (ADI) more than six years ago, so has therefore worked with Kate in two roles, first as the CEO of Dementia Australia, then as Chair of ADI.  Glenn said,

‚ÄúI have had the privilege of working with Kate for over more than twelve years. In all that time she has single-mindedly pursued the rights of people with dementia without fear or favour. There are so many achievements – the leadership of the National Consumer Committee in Alzheimer‚Äôs Australia, the excellence of many presentations, the publications, the capacity to communicate via social media and presence on so many committees both governmental and in the NGO sector. But in the end, it is the values that drive an advocate that count and for integrity, generosity and commitment Kate has few peers ‚Äď except those she herself would always generously acknowledge such as Richard Taylor. Climbing mountains has been Kate‚Äôs specialty and perhaps the pinnacle was addressing the Ministerial Conference on Dementia in 2015 ‚Äď the human rights of people with dementia were put on the international agenda. The dementia movement in Australia and internationally have cause to be grateful to Kate.‚Ä̬†

DAI’s long serving volunteer, Sarah Yeates who is the Chief Executive Officer at the Caladenia Dementia Care, wrote,

Dear Kate, as someone who works in the field of dementia and has a passion for better outcomes for people living with dementia, I just wanted you to know what a difference you have made for me personally and for so many of my colleagues. Your willingness to call out injustice and apathy, not only locally but on the global stage pushes professionals like myself to do better, strive higher, and believe that there is always more to be done. You have taught me so much, and I continue to learn. Because of your work, my own has greater meaning, and hopefully is grounded in truly person-centred principles. On a personal level I thank you for your friendship over the many years we have worked together and promise that one day… we will have that glass of wine together!! Thank you for all you have taught me. All the very best to you and your family, and I look forward to continuing to work with you wherever I can be of assistance!! Lots of love, Sarah xx

In her own words, Kate said, 

“It is time for the new team to take the reins, and lead DAI into the direction its members want. I will always be happy to provide mentorship, and advice as requested to the board, and to members. The greatest professional work I have ever done, has been to support people diagnosed with any type of dementia, and I will continue to do this as a co-host of the DAI Peer to Peer support groups.

The fear and loneliness I experienced when first diagnosed, mostly due to the stigma and attitudes of others, was truly devastating, and the DAI peer to peer support groups helped, and continue to help our members get back to living more positively. No one person can do this work alone, and everything I have achieved, is because of the collaboration, hard work and support of the members and the current and past boards, and of so many others including DAI members. They all continue to inspire me.‚ÄĚ

Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has. Margaret Mead

Donate

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 РMEMBERSHIP Section 1 of our By Laws to the following:

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

Section 1 ‚Äď 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 ‚Äď 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‚Äôs 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.

Donate

Acceptance by Terrie Montgomery

We are more than half way through Dementia Awarness Month, and continue to share stories from people with dementia, including many DAI members. Our blog today is written by one of our newer board members, Terrie (Theresa) Montgomery, who lives in the USA.

Thank you Terrie!

Acceptance

‚ÄúWhere there is a will, there is a way. If there is a chance in a million that you can do something, anything, to keep what you want from ending, do it. Pry the door open or, if need be, wedge your foot in that door and keep it open.‚Ä̬†(Pauline Kael)

It was in 2015, that I was diagnosed with Early Onset Alzheimer’s.  The first thing I had to do was being able to accept it and live with it.  So far, I have.  But when it becomes more difficult is when we are juggling multiple diagnosis.  Not only myself, but there are quite a few others living with some form of Dementia and whalla out of no where, they too are trying to stay afloat.  Some of us fall victim of being diagnosed with not only one, but two, three and more. I am part of that MORE.  That is why it is so important to have or develop a sense of humor and more importantly hold on to our Faith.

Some may say, a sense of humor?¬†¬†Faith?¬†¬†What will that do? Having Dementia with other diseases and ailments added to it is far from funny, humorous or welcoming. Yes, I totally agree but what can we do about it?¬†¬†Simply put, we CAN be open to ACCEPTANCE.¬†¬†Yes, ACCEPTANCE, which prompts us to have a game plan, a adjustable attitude and a willingness to always believe there‚Äôs is a solution.‚Ä̬†¬†That is where the Faith part comes into play.

None of us is exempt from things happening to us. None of us is exempt from being diagnosed with Dementia or any other disease.  Life Happens.  Of course we ALL know that there are preventive measures we can do to reduce us from certain medical conditions and diseases but we also know that Dementia like the Coronavirus does not have a respect of person. At this current second another person has been diagnosed with Dementia and possibly another disease or ailment.

Worldwide, around 55 million people have dementia, with over 60% living in low- and middle-income countries. As the proportion of older people in the population is increasing in nearly every country, this number is expected to rise to 78 million in 2030 and 139 million in 2050. (Google latest global statistics of Dementia).

The numbers listed are quite staggering. Hence, more of us need to be able to try our best to fight, to be well informed of clinical trails.  To advocate for ourself as a patient as well as advocate for our human rights to be treated respectfully and seriously.  Speaking of being treated respectfully and seriously is applicable to others that are living with Dementia as well   It is very therapeutic to uplift others that are living with a form of Dementia.

Yes, encourage those that are in our circle to keep fighting, remain engage, continue to build up one another¬†¬†and NEVER tear down one another. All of us need peer support and kindness across the board.¬†¬†‚ÄúNothing About Us Without Us!” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group affected by that policy. From Wikipedia,

The reason why I am sharing this is to encourage others, that are like me as well as caretakers.  It is no joke to live with Dementia, but it is achievable.  It is no picnic for others to judge, prejudge, or make assumptions in trying to predict or give a personal assessment where a person is in their disease or mental state. That can only be evaluated by a professional neurologist or physician.  It is imperative that everyone within the circle of some one living with Dementia has ALL of their affairs in order.  That can be difficult but yet necessary.

I must admit, that I am NOT perfect or 100% ready for the unknown but I am 100% ready to enjoy each second of a brand new day! Some of us has a full plate of circumstances beyond our control and some of us have (Fill in the blank).

However, I will not allow anything or any one steal my joy and neither will it steal any one else joy if we remain focused on the good in our life. Focus on the legacy we will leave behind but most importantly focus on the now, this second, this minute, this day!  Make sure it is NOT wasted.

Instead, park our illnesses, park our Dementia, park worldly events and definitely park everything that make us sad. Grab ALL the joy, positiveness, happy thoughts, happy steps, and precious memories we are going to make today.

If I can do it….WE CAN DO IT!

Why not?  Every day is a gift ..enjoy it! We are only going to travel this route once.  Everything is in Acceptance status for today and every day!  Right now at this moment, I am feeling my finest!  It can’t get any better than that if we keep our positive attitude on track!

Acceptance keeps Everything on track…..

Theresa (Terrie) Montgomery 9/13/21
Living with Younger Onset Alzheimer’s Disease
DAI Board Member
DAA Advisory Board Member

Donate

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.

Please donate to DAI today Donate

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.

A Call to Action by Julie Hayden

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia. Today, is a personal article, and a call to action,  written by DAI board member, Julie Hayden from the UK. Thank you Julie.

Ignoring the stigma: A Call to Action

By Julie Hayden
Hi, I’m Julie Hayden from Halifax in UK. As part of World Alzheimer’s Month I thought I’d just share some musings with you on my dementia and how I prefer to be seen.
Firstly, despite my dementia, I am a person, not a disease or a condition.
I am, and always will always be, a mother, grandmother, friend and someone who cares passionately about the rights of others.
I have been outspoken all my life, and refuse to stop until my dementia forces me to do so. I realise that this sometimes makes me unpopular and means that some people view me as being difficult, but quite frankly, at this stage in my life, I don’t care.
Why should I allow my dementia, or others’ stigmatised view of it dampen my spirit or my drive for more justice in the world? I now assess others far more on their actions than their rhetoric.
I recognise many faults in myself, but refuse to see my fight for a fairer world for people with dementia as one of them. 
I often think about how my uncooperative nature will impact on me later when I am living in residential care.
Will my unwillingness to do as I am told regardless of my wishes be interpreted as BPSD? Am I destined at some point to be “managed” by chemical cosh? I hope not, but at that point in my life I may have little or no personal influence.
The only thing that my friends, colleagues and I can do to prevent that happening, at least for those who follow on from us is to talk and write about our lived experience as a way of educating and enlightening others.
So please, join with us within DAI and the many other dementia organisations across the globe to make 2021 a year when we are able to take a step forward in banning BPSD and look at more humanistic and holistic ways of caring for people living with dementia.
Thank you.

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

Clearly, life is not over with a diagnosis of dementia…

Julie Hayden is a¬†Board Member Dementia Alliance International (DAI), a¬†Founder of Young Onset Dementia & Alzheimer’s (YODA), a Steering Group member of the¬†3Nations Dementia Working Group (3NDWG), Prime Minister’s Champion’s Group on Dementia and a
Board Member Deepness Radio & Recovery College.

WE CAN by Terrie Montgomery

 

 

In 2021 DAI once again observes¬†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, Day 3 of WAM, we are delighted and proud to publish an article written by DAI board member, Terrie Montgomery from the USA, an excellent piece focused on what people with dementia CAN still do.

Thank you Terrie.

‚ÄúMy mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style‚ÄĚ. Maya Angelou

WE CAN

By Terrie Montgomery 08//25/21
We have added this collage of images and quotes, as it beautifully represents the amazing woman and friend that Terrie is to so many of us.

Some times I find myself asking the question, ‚ÄúWhere do I go from here‚ÄĚ.¬†¬†Have you ever ask yourself that question?¬†¬†Yes/No?¬†¬†In my case, I ask it quite frequently because living with dementia, can cause us to wonder.

“Where do We go from here‚ÄĚ;¬†When we notice changes occurring in our life.¬†¬†For example our memory is becoming shorter, or we can‚Äôt concentrate or multi-task or we tend to a back¬†track often¬†or find ourself saying, ‚ÄúWhat was I doing or looking for?‚Ä̬†¬†Hence, we begin to feel frustrated that we are slowly losing that perfect 10 ego we once were so proud about, slowly slip away!¬†¬†Sound familiar?

Now let’s change gears!

We do NOT or should NOT dwell on what we use to be able to do, when we still CAN do so much more.

Yes, so much MORE!  For example, perhaps we may have a hobby, that we always wanted to do and still have not started, why not start doing it now?  Or we always wanted to (Fill in the blank).  Again, why not do whatever we CAN right now? What are we waiting for?

Some may think, it sounds easy to me but it is NOT that simple! That is a absolute truth but we have to instill in our mind as we travel through our journey to be satisfied with what we still have, and CAN remember.  THINK ABOUT IT!

We CAN distinguish what‚Äôs right, We CAN breathe, We CAN recognize our name, We CAN distinguish morning from¬†night, and more importantly we CAN learn what to eat to improve brain functioning….and ‚ÄúHow can we do that‚ÄĚ?¬†¬†¬†Just do it! Take time to DO things we normally may not do or feel we CAN do and that is:¬†add research to our daily to do list. It is as easy as 1,2,3¬†¬†to get started.

Finally, here is a link that may have some valid pointers that we CAN incorporate in our daily routine to improve our brain health and keep us fired up!  Even if we can’t remember something earlier, YES WE CAN certainly learn something new today!

Let‚Äôs ‚ÄúDo this‚ÄĚ!

Have¬†a day that is just like ‚ÄúYou‚ÄĚ… totally awesome!

Terrie Montgomery, Dementia Advocate
Living with Younger Onset Alzheimer’s
Board Member, DAI  Dementia Alliance International
Advisory Board, DAA Dementia Action Alliance

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.

Newsflash: Environmental Design Special interest Group

Announcing the DAI Environment and Dementia Special Interest Group (ED-SiG)

As announced in our e-Newsletter earlier this week, the DAI Board of Directors has just endorsed a new group, the Environment and Dementia Special Interest Group (ED-SiG), an initiative co-founded by new board member, Emily Tan Tan Ong from Singapore, and DAI co-founder, Kate Swaffer.
It is an important initiative that DAI believes will increase opportunities for global collaboration and cooperation on a critical issue effecting people with dementia and our families.
The aim of this group is to create action following the award-winning ADI ¬†2020 World Alzheimer’s Report, and the subsequent Design Manifesto which was initiated by the lead authors of the WAR Report, Professor Richard Fleming, Kirsty Bennett and John Zeisel.

Ps. Don’t forget ¬†to sign up for our next Webinar, ¬†From Rhetoric to Reality: Designing well for people living with dementia¬†being presented by the authors and ADI’s Acting CEO, Chris Lynch.¬†

Purpose and role of the ED-SiG: The broad purpose of this group is to provide expert advice on and input into working towards the importance of, and more importantly, moving from the rhetoric of dementia-enabling design to the implementation of environmental design. This group proposes it is with a particular focus on dementia-enabling design in the community. Environment is more than just the built environment; it includes all the surrounding things that have a direct impact on our lives.

We believe there is a need to look into all aspects of environment including:

  1. Natural environment ‚Äď how can we incorporate the natural surroundings to provide the peace and tranquility to the quality of life of those living with dementia who need the calmness from the nature as a healing therapy
  2. Built environment ‚Äď how can buildings and infrastructures be designed in a manner that is accessible and usable by everyone including people with disability
  3. Rehabilitative environment – how can the environment minimise impairments impact, activity limitation and participation restrictions
  4. Communal living environment ‚Äď how an environment can be intentionally created to reflect the shared values of a community
  5. Sustainable environment ‚Äď how an environment is designed to promote and support a more sustainable lifestyle like Grow Your Foods, the 3Rs, No Food Wastage

Aims of the EDG-SiG:  The group is an initiative of DAI member Emily Tan Tan Ong, and was formally established in 2021, and approved by the board of Dementia Alliance International.

After years of costly and time consuming reports, multiple costly research projects, and many community initiatives such as the Dementia Friendly Communities, that none of these or other initiatives appear to have made little if any impact on improving inclusion and  access, or quality of life, the time is now for action.

This group is therefore committed to advocate for action; to move away from rhetoric, to tangible change that really makes a difference.

Members currently include:

  1. Mrs Emily Ong, Singapore (Lead)
  2. Ms Kate Swaffer, Australia
  3. Emeritus Professor Richard Fleming, Australia
  4. Professor Habib Chaudhury, Canada
  5. Mrs Christine Thelker, Canada
  6. Dr Tetsuro Ishihara, Japan
  7. Associate Professor Carol Ma, Singapore
  8. Associate Professor Shamira Perera, Singapore
  9. Professor Satoko Hotta, Japan
  10. Professor Satochi Ishii, Japan
  11. Tomofuni Tanno, Japan
  12. Dr Jan Golembiewski, Australia

If you would like to join this initiative, please contact us at [email protected] with a brief introduction about yourself, and your reasons for wanting to join.