Category Archives: Dementia

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.

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.

World Alzheimers Month DAI Webinar Series

World Alzheimer’s Month 2021 #WAM2021,  also known in some countries as Dementia Awareness Month #DAM or Dementia Action Week #DAW is almost here!

Lets’s all work together to make a difference.
#Collaborate #Cooperate #WorkingTogether

This year DAI has planned a series of webinars specifically focused on rehabilitation for dementia. We have done this, as people with dementia have been campaigning for the full suite of rehabilitative interventions for decades, and at last, we appear to be seeing small actions towards actually achieving this.

Last year, Professor Lee-Fay Low and A/Professor Kate Laver edited a book on Rehabilitaiton for Dementia. This year, the World Health Organisation has been working on their own Rehabilitation for Dementia Guidelines, so there is hope it will eventually make it into mainstream clinical and care practice.

Rehabilitation and Dementia #DAI Webinar Series 2021

  1. Webinar 1: Rehabilitation to maintain physical function, presented by A/Prof Michele Callisaya and Dr Morag Taylor
  2. Webinar 2: Living life to the full: rehabilitation of daily activities and leisure for people with dementia, presented by Associate Professor Kate Laver and Doctor Claire O’Connor
  3. Webinar 3: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski
  4. Webinar 4 Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Emily Ong, Lynette Rogers and Kate Swaffer

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI aims to highlight why.

REMINDER

Reminder to register for the two webinars this coming week too, both very important sessions exploring new ways of managing dementia.

  1. How to make Alzheimer’s a rare Disease!, by Professor Dale Bredesen, M.D.
  2. Updates In Precision Medicine and Protocols for MCI & Dementia, by Dr Nate Bergman DO, MBA

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 set up by new board member, Emily Tan Tan Ong from Singapore.
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 – 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 – 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 – how an environment can be intentionally created to reflect the shared values of a community
  5. Sustainable environment – 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.

Volunteer Vacancies

Photo by Julia M Cameron from Pexels

Dementia Alliance International (DAI) is a registered 501c3 charity in the state of Texas in the United States of America. Is is a charity that is run by, and for people with dementia, with no paid staff.

Volunteers currently support our important and demanding work.

DAI has three volunteer vacancies:

Dementia Alliance International (DAI) is a registered charity in the state of Texas in the United States of America; a charity that is run by, and for people with dementia with no paid staff. We do however, have volunteers who support our important and demanding work, and also thank our past, current and future Volunteers! We are currently looking for three new volunteers to support this innovative and highly successful advocacy organization.

Three Volunteer Vacancies:

  1. Board Secretariat: needs a demonstrated ability to keep accurate records, attend board meetings and the AGM, provide minutes, and other duties including advice on Governance.
  2. Finance Officer: needs a demonstrated ability to manage financial resources and develop budgets, prepare reports using Quickbooks, and so on.
  3. Webinars, Marketing and Social Media: this includes setting up webinars using Eventbrite, managing a calendar of keynote speakers, using MailChimp to communicate with members and supporters, and adding content to Twitter, LinkedIn and Facebook.

Key attributes:

  • Willing to work under the direction of the organisation, i.e. working under the instruction of people diagnosed with dementia, in accordance with nothing about us, without us
  • Agree to use DAI marketing and branding formats in all matters, including communications such as powerpoint presentations
  • Be willing to treat the role with the same professionalism as a paid position
  • Provide adequate notice if you need to step down
  • A background in or a full understanding of co-design
  • Knowledge and awareness of dementia as a disability, and equal access to the CRPD
  • Proven ability to work as a member of a team
  • Some education in dementia, or a background in dementia care

Essential criteria includes;

  • Confidentially
  • Willing to work under the direction of people with dementia
  • Willing to sign a Conflict of Interest form


 

 

Virtual Civil Society Forum at CoSP14

The Civil Society Coordination Mechanism, facilitated by the International Disability Alliance (IDA) hosted a Civil Society Forum on 14 June 2021

This forum precedes the COSP, which starts in about 12 hours.

We quote here from one of the the opening speeches, in particular from the Chair of the International Disability Alliance, Ms Anna Lucia. In her keynote address, she said:

“There is no such thing as a good institution.”

Another important point made by one of the other speakers, as without access, there is no inclusion:

“Access is crucial for equal inclusion and participation”

You can access the draft agenda for CoSP 14, and below is the list of side events with IDA Participation during COSP14, from Monday 14 to Friday 18 June 2021.

Watch LIVE the COSP14 from 15 to 17 June

Theme and sub-themes

Overarching theme: Building back better: COVID-19 response and recovery; Meeting the needs, Realizing the rights, and Addressing the socio-economic impacts on persons with disabilities

Sub-theme 1: Protecting the rights of persons with disabilities in armed conflict and humanitarian emergencies
Sub-theme 2: Living Independently, being included in the community
Sub-theme 3: Right to education; challenges with inclusive education and accessibility during COVID-19

Side Events with IDA Participation

Monday, June 14th

Time: 8:30 am – 9:45 am
Title: Protecting the Rights of Persons with Disabilities during Pandemics and Crises”
Organised by: League of Arab States, Arab Organisation of Persons with Disabilities
Link to join here
Link to concept note

Time: 3.00 PM – 4.15 PM EDT
Title:
Digital Accessibility: Strategies Towards Ensuring the Inclusion of Persons with Disabilities in Post-Pandemic Building Better Efforts
Organized by: G3ICT
Link to Register
Link to Concept Note

Tuesday, June 15th

Time: 8.30 AM – 9.45 AM EDT
Title:
Wethe15 Campaign
Organized by: International Paralympic Committee
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Barriers, Enablers, and Solutions for Disability inclusive education during the COVID-19 Pandemic
Organized by: UNESCO
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title: COVID-19 Response in Humanitarian Settings – How are Persons with Disabilities Included?
Organized by: UNHCR
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Transforming our Communities: from Segregation to Inclusion
Organized by: Inclusion International
Link to Register
Link to Concept Note

Time: 8:30 AM – 9:45AM  EDT
Title: Bridging COVID-19 Response and Recovery: Learning from the Inclusive Futures Programme
Organized by: Inclusive Futures, Sightsavers
Link to Register

Time: 10.00 AM – 11.15 AM EDT
Title:
The Situation of Indigenous Women and Girls with Disabilities in the Recovery Efforts from the Pandemic of COVID-19
Organized by: RIADIS
Link to Register
Link to Concept Note
Link to Flyer

Time: 1.15 PM – 2.30 PM EDT
Title:
Access to Justice: For an Inclusive and Quality Police Service for Persons with Disabilities
Organized by: Special Envoy UNSG on Disability and Accessibility
Link to Register
Link to Program
Link to Invitation

Time: 6.00 PM -7:15 PM EDT
Title:
Leave No One Behind in Education: Rights to Education of Persons with Disabilities during the COVID 19 Pandemic
Organized by: DPI Korea
Link to Concept Note

Wednesday, June 16th

Time: 8.30 AM – 9.45 AM EDT
Title: Disability-Inclusive Climate Action: Why and How?
Organized by: IDA
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title: One Pandemic, Different Realities: Evidence on the Experience of the Diversity of Persons with Disabilities and their Representative Organisations in Dealing with the COVID-19 Pandemic and Preparing to Build Back Inclusively
Organized by: IDDC
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Enabling Social Support Systems: Preparing Grassroots Communities for Inclusion of Persons with Psychosocial Disabilities
Organized by: TCI
Link to Connect
Link to Concept Note
Link to Program
Link to Flyer

Time: 8.30 AM – 9.45 AM EDT
Title:
Towards Meaningful Inclusion: Participation of Youth with Disabilities from Commitment to Call to Action and Compliance
Organized by: Office of the Secretary General’s Envoy on Youth in Partnership with WHO
Link to Register
Link to Concept Note
Link to Flyer

Time: 8:30 AM – 9:45 EDT
Title:
Representation Matters! Deaf Members in the UN Committee on the Rights of Persons with Disabilities
Organized by: Permanent Mission of Austria (to the United Nations of New York), WFD, Light for the World
Link to Register
Link to Flyer

Time: 10.00 AM – 11.15 AM EDT
Title: Global Disability Summit 2022: Where are We Going?
Organized by: the Co-Chairs of the Global Action on Disability (GLAD) Network
Link to Register
Link to the event

Time: 10.00 AM – 11.15 AM EDT
Title:
Show-casing Success of Commonwealth Disabled People’s Forum Online Disability Equality Training
Organized by: Commonwealth Disabled People’s Forum (CDPF)
Link to Connect
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Taking a Step Back Before Moving Forward: What Have We Learned to Support Inclusive Recovery?
Organized by: UNPRPD
Link to Register
Link to Concept Note

Time: 1.15 PM -2.30 PM EDT
Title: Impact of Armed Conflict and Coronavirus Disease (COVID-19) on Persons with Disabilities – Prioritizing Mental Illness or PTSD in the Socio-Economic Recovery Strategies
Organized by: CADUS
Link to Register
Link to Concept Note

Thursday, June 17th

Time: 8.30 AM – 9.45 AM EDT
Title: The Most Active Advocates, the Last to be Included: Women with Disabilities Affected by Armed Conflict
Organized by: Permanent Mission of Ireland to the UN
Link to Concept note

Time: 8.30 AM – 9.45 AM EDT
Title: WE DON’T WANT TO REMAIN STUCK AT HOME: Towards Inclusive and Responsive Social Protection Systems
Organized by: UNPRPD, ILO, UNICEF, IDA, FCDO
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Promoting the Inclusion of Persons with Disabilities in Just Transition Towards a Sustainable Economy
Organized by: ILO
Link to Concept Note

Time: 9.45 AM – 10:45 AM EDT
Title:
Inclusive Recovery from COVID19 Pandemic – Ensuring Organizations of Persons with Intellectual Disabilities and their Families are Consulted and Involved with Development Organizations and Governments in Building Back Better
Organized by: Inclusion International
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Freedom to Live: Malta’s Path to 2030
Organized by: Malta

Time: 10.00 AM – 11.15 AM EDT
Title: Implementing Art. 11 of the CRPD in Armed Conflict: Making Persons with Disabilities More Visible
Organized by: ICRC
Link to Connect
Link to Concept Note

Time: 11.30 AM – 12.45 AM EDT
Title:
Youth with Disabilities: Opportunities in COVID-19 Recovery and Onwards to the Youth with Disabilities Summit
Organized by: ULAC
Link to Register
Link to Concept Note

Time: 1.15 PM -2.30 PM EDT
Title:
Gender-Responsive Disability Inclusion in Conflict and Post-Conflict Contexts
Organized by: United Nations Entity for Gender Equality and Women’s Empowerment (UN Women)
Link to Concept Note

Friday, June 18th

Time: 8.30 AM – 9.45 AM EDT
Title
: Disability Inclusion in the Health Sector
Organized by: WHO
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Nothing About Us, Without Us: Amplifying the Priorities of Women and Girls with Disabilities to the CRPD and CEDAW Committees in the Post-COVID Recovery Process
Organized by: ADF
Link to Register
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title: How COVID-19 – Affected SPED Teachers & How the Use of Technology Saved Students with Special Needs
Organized by: Athena Fund
Link to Register
Link to Invitation

New landmark resolution on disability adopted at the 74th World Health Assembly

Opening of the 70th World Health Assembly, a very different look to #WHA74 due to COVID-19.

On May 27, 2021, under the heading of Departmental news, the World Health  Organisation (WHO) reported on a new landmark resolution on disability adopted at the 74th World Health Assembly #WHA74. This is very significant to people with dementia globally because “dementia is a major cause of disability and dependence worldwide” (WHO)

News release:

A new landmark Resolution EB148.R6 “The highest attainable standard of health for persons with disabilities” was adopted by the 74th World Health Assembly. The resolution aims to make the health sector more inclusive by tackling the significant barriers many persons with disabilities face when they try to access health services.

These include:

  • Access to effective health services: persons with disabilities often experience barriers including physical barriers that prevent access to health facilities; informational barriers that prevent access to health information; and attitudinal barriers leading to discrimination which severely affects the rights of persons with disabilities.
  • Protection during health emergencies: persons with disabilities are disproportionately affected by public health emergencies such as the COVID-19 pandemic because they have not been considered in national health emergency preparedness and response plans.
  • Access to public health interventions across different sectors: public health interventions do not reach persons with disabilities because the information has not been provided in an accessible way and the specific needs and situation of persons with disabilities have not been reflected in the interventions.

The Resolution also aims to improve collection and disaggregation of reliable data on disability to inform health policies and programmes.

The resolution lists a range of actions to be taken by the WHO Secretariat including developing a report on the highest attainable standard of health for persons with disabilities by the end of 2022; implementing the United Nations disability inclusion strategy across all levels of the organization; supporting the creation of a global research agenda on health and disability; and providing Member States with technical knowledge and capacity-building support necessary to incorporate a disability- inclusive approach in the health sector.

International Womens Day 2021

On March 8 each year DAI joins the world in celebrating and recognising women. The theme in 2021 is #ChooseToChallenge. A challenged world is an alert world. Individually, we’re all responsible for our own thoughts and actions – all day, every day.

We can all choose to challenge and call out gender bias and inequality. We can all choose to seek out and celebrate women’s achievements. Collectively, we can all help create an inclusive world.

From challenge comes change, so let’s all choose to challenge.

In reality, all women and men make a difference, but historically, and even today, women often do not receive public recognition or praise for their work.

DAI represents the more than 50 million people currently living with dementia, and I am one of them, and those with a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is listed by the WHO as the fifth highest cause of death for women worldwide and is a major cause of death and disability in older persons.

Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.

Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia, and you can join with us on March 8, 2021 by donating to support our work.

Gendered barriers to mobility and accessing justice lead to isolation and exclusion.

Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.

Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.

It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.

Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.

In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.

More often, women and girls also are the main informal family care partners for people livign with dementia, so not only do more women get diagnosed with any types of dementia they do the lions share of the informal care.

#ChooseToChallenge

About International Women’s Day

“International Women’s Day is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity. Significant activity is witnessed worldwide as groups come together to celebrate women’s achievements or rally for women’s equality.

Marked annually on March 8th, International Women’s Day (IWD) is one of the most important days of the year to:

  • celebrate women’s achievements
  • raise awareness about women’s equality
  • lobby for accelerated gender parity
  • fundraise for female-focused charities”

Please donate to Dementia Alliance International today, as the charity directly supporting women living with dementia and their families.  Thank you.

Review of Webinar – Living with Dementia by Bobby Redman

DAI “Meeting Of The Minds” Webinar – Living with Dementia: Supporting those who have it and care partnersby Laurie White.

Review by Bobby Redman, Vice Chair, Dementia Alliance International

Another successful Meeting of the Minds Webinar took place on the February 24th / 25th, with 147 registering to attend.  Although not everyone who registered, made it to the presentation by Laurie White from Dementia Care Consulting, there were 55 attendees, with a good mix of people living with dementia, care partners, health care professionals and researchers.

Laurie’s extensive experience, in working with people with dementia and their families became clear during her presentation: Living with Dementia – Supporting those who have it and care partners. Her perspective showed empathy and insight into the world of people living with dementia and their care partners.

Although we are all aware that peoples’ experience of dementia differs and not everyone thinks and acts in the same way, I could relate to many of the quotes and suggestions made by Laurie. Her focus on the “humanity of the person”, recognising that we all have our own stories and urging carers to put themselves in the shoes of those living with dementia, who may feel that they are still the same inside, was heart-warming.

For me, the recognition that dementia is not all about memory was particularly meaningful, as this is often missed by health professionals, who often fail to identify the real issues because they are constantly measuring for loss of memory.

I also enjoyed her perspective on how to communicate better with people living with dementia, reminding people to meet our personal needs in that area – a true person-centred approach.

Laurie clearly captivated the audience judging by the numerous questions following the presentation. Laurie generously responded to queries, both related to her presentation and the many other questions about unrelated areas, thrown her way.  Without a doubt there are still many, out there, seeking a better understanding of dementia and a practical presentation, such as this, hopefully, provided this, as well as some insightful ideas on providing supportive care.

For those who missed the presentation, Laurie has given us permission to share her PowerPoint.  This is available now, and a recording of the actual presentation, which covers a great deal more that will be available down the track, once edited.

Download Laurie’s slides here.

Donate to DAI today to ensure we can host more free webinars like this for you!

Introducing our new Chair, Alister Robertson

Alister Robertson, NZ

As we celebrate our 7th birthday this week, we are also delighted to introduce Dementia Alliance International (DAI) member Alister Robertson as our new Chair.

Alister has been a member since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

We are truly delighted to introduce Alister Robertson as our new Chair to  you. Alister has been a member of Dementia Alliance International (DAI) since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

Alister is taking over from Kate Swaffer who continues as a board member, and the CEO.

About Alister: Alister’s new leadership role has been endorsed and welcomed by the Board of Directors and by our members, and is recognition of the hard work Alister has done globally for our members, and in New Zealand where he is on the Board of Alzheimers New Zealand and a member of their Advisory Group.

He has a strong commitment to supporting people with dementia to have a voice, and to be included locally, nationally and globally.

Alister graduated from Lincoln University, Canterbury New Zealand in 1978 with Bachelor Agricultural Commerce. Spent the following 30+ years in the rural finance sector lending money to the primary sector.

In 2009 Alister and his wife, Charlene decided they would like to do something together, given their four sons had finished their schooling and were doing their own thing. Alister and Charlene resigned from their respective jobs, sold their newly built home and purchased a Motel in Taupo, which they sold four years later.

They then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They had a retail and café business until Alister’s dementia diagnosis.

Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. He endeavours to follow the advice of trying to maintain a healthy brain by way of diet, remaining socially involved, good sleep, staying mentally active and exercise. Alister is a keen cyclist, which is his main mode of transport and this helps keeping him fit.

Alister participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI, as well as more people with dementia globally to join for peer-to-peer support, and to get involved in the global work done by DAI.

Help people with dementia to continue to be included, to be supported and to have a voice, by donating today. 

Thank you.