Category Archives: Rehabilitation

Join us online today for the DAI Side Event: Dementia as a disability

Please join us online today for the DAI Side Event being hosted at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). Dementia: The leading cause of disability.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries. UN Web TV

Watch live UN Web tv at the following times:

  • Thu, 13 Jun 2019 at 6:45 am Pacific Time
  • Thu, 13 Jun 2019 at 7:45 am Mountain Time
  • Thu, 13 Jun 2019 at 8:45 am Central Time
  • Thu, 13 Jun 2019 at 9:45 am Eastern Time – LIVE IN NYC
  • Thu, 13 Jun 2019 at 2:45 pm London, UK BST
  • Thu, 13 Jun 2019 at 3:45 pm Brussels, Belgium CEST
  • Thu, 13 Jun 2019 at 11:15 pm Adelaide, Australia ACST
  • Thu, 13 Jun 2019 at 9:45 pm Perth, Australia AWST
  • Thu, 13 Jun 2019 at 11:45 pm Sydney/Melbourne/Brisbane, Australia AEST
  • Fri, 14 Jun 2019 at 1:45 am Auckland, New Zealand NZST

Speakers

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care:

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening remarks

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “QualityRights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

Please check your time here if not listed above: https://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+CoSP+Side+Event+June+2019&iso=20190613T0945&p1=2416&ah=1&am=15

Statement by DAI Chair Kate Swaffer #COSP12

Civil Society Statement presented at the Conference of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD), on June 13, 2019, presented by DAI Chair, Kate Swaffer.

Tune into the live UN TV webcast here to watch the days proceedings.

Distinguished Chairs, speakers and delegates.

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.

Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.

We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.

This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.

That is also why DAI has organised a Side Event, taking place on Thursday morning.

No one and no organisation has ever represented people with dementia in this way, at this conference before.

Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr.  called ‘that sense of otherness’.

I had not been stigmatised or discriminated against, except as a woman.

I had not come from a deeply marginalised group.

However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.

Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.

However, after a diagnosis, we do not receive access to universal health health care.

We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.

We are segregated from others when we require assisted living. 

We are institutionalised.

We are restrained physically and chemically, with no consideration of our rights.

In society, clinical practice is only provided, when supported by strong evidence based research.

However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.

This has lead to further chemical and physical restraint.

Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.

Disease or disability specific villages are little different to ghettoisation of groups of people.

They are not a solution to those people with dementia who do need assisted living.

We are daily and systemically being denied our human rights.

Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.

Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.

This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.

Thank you

Kate Swaffer
Chair, CEO & co-founder
Dementia Alliance International

Update on the upcoming 12th session of the Conference of State Parties to the CRPD

Next week, the 12th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities takes place from Tuesday 11 to Thursday 13 June 2019 at UN Headquarters in New York. On Monday 10 June, a Civil Society CRPD Forum will be held to complement the Conference.

DAI will be attending both events, aiming to represent the 50 million people currently living with dementia, and each person who is  newly diagnosed every 3.2 seconds. It is a hostorical moment in the advocacy of, by and for people with dementia. That this DAI Side Event was accepted is a first, and highlighting. Dementia as a disability has never been represented  at the CoSP conference ever before.

The Themes and Sub-Themes

The overarching theme of the Conference is “Ensuring the inclusion of persons with disabilities in a changing world through the implementation of the CRPD”.  This is highly relevant to people with dementia and our families.

Three round tables will address the following themes:

  • Technology, digitalization and ICTs for the empowerment and inclusion of persons with disabilities
  • Social inclusion and the right of the highest attainable standard of health
  • Inclusion of persons with disabilities in society through participation in cultural life, recreation, leisure and sports

Highlights for the week:

  • The Civil Society Forum on Mon 10 June will address what is the current state of play; capacity building; and protection of the rights of children with disabilities.
  • Civil Society representatives speaking in all official sessions of the CoSP and co-moderating all three round-tables from Tues 11 to Thurs 13th June.
  • On Wednesday 12,  Matters related to the implementation of the Convention (item 5 (b) (ii): Round Table 2. Social inclusion and the right to the highest attainable standard of health – will be co-chaired by H.E. Ambassador Katalin Annamária Bogyay of Hungary, Vice President of the Conference and Ms. Kate Swaffer Civil Society representative from Dementia Alliance International, also Chair and CEO of DAI.
  • The Chair of the International Disability Alliance will speak at the opening of the CoSP, as a representative of the Civil Society Coordination Mechanism, and alongside UN Secretary-General
  • 100 side-events are being organised, covering a broad range of topics
  • IDA and its members will also be co-sponsoring and/or speaking at over 20 side-events, including DAI’s.
  • DAI is hosting its own and first Side Event on Dementia as the leading cause of disability on June 13, with live web  cast, International Sign and Closed Captioning services provided, to ensure accessibility to and for as many people as possible

Don’t miss watching the DAI side-event “Dementia: the leading cause of disability”.

DAI will be not only be celebrating our 5th Birthday at this exciting event,  but also ensuring dementia as a disability definitively joins the global disability stage. This event is being held on Thursday June 13, 9.45-11.00 am in Conference Room 11.

Note: We will be posting a blog with the times and link to the live webcast as soon as the link is available to share.

 

Rehabilitation for dementia: evidence and opportunities

For those of you who missed our latest Webinar presented by Associate Professor Lee-Fay Low, Rehabilitation for dementia: evidence and opportunities, it is now available to view here and on our YouTube channel. Thanks again to Lee-Fay for her continued support for DAI.

About the Webinar: The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Watch the presentation below, and download the slides here…

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” ( 2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the launch of the first UN Flagship Report on Disability and Development on the “Realization of the Sustainable Development Goals by, for and with persons with disabilities”The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.

Rehabilitation and dementia: evidence & opportunities

Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.

 

 

 

 

 

About the Webinar:  The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

Register here…

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Register here…

Wednesday, November 28, 2018 – times (USA/UK/EU/CA):

10:00 am  Honolulu
12:00 pm  Oregon Portland/San Francisco USA
12:00 pm  Vancouver CA
2:00 pm    Des Moines/Chicago USA
3:00 pm    New York USA
3:00 pm    Toronto CA
8:00 pm    London/Glasgow UK
9:00 pm    Paris, Munich, Amsterdam, EU

Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):

6:00 am    Adelaide AU
6:30 am    Brisbane AU
7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:00 am    Perth AU/Taipei TWN
5:00 am    Tokyo, JP
9:00 am    Auckland, NZ

The webinar runs for 1 hour. 

Check your time if not listed above by using clicking this link… 

Register here…

 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • DONATION (this is not in lieu of a paid ticket unless it is higher than the fee, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT IS GREATLY APPRECIATED.

WEBINAR FEES AND DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

Dementia as a Cognitive Disability

Howard Gordon and Professor Peter Mittler at the Global Disability Summit 2018

Todays article follows on from yesterday, also written by DAI member and a human rights consultant, Professor Peter Mittler.

It is a detailed and reflective insight into the importance of seeing Dementia as a Cognitive Disability.

Dementia as a Cognitive Disability

By Peter Mittler [1]

The United Nations recognises dementia as a cognitive disability.

Why are governments and professionals so slow to accept that dementia is a disability like any other and that people affected by dementia have the same rights as other disabled people under the United Nations Convention on the Rights of Persons with Disabilities?

The CRPD is now ten years old.  Why has it taken people with dementia so long to demand their rights?

Dementia was not mentioned by any of the speakers or the 800 delegates from all over the world at the recent Global Disability Summit organized by the Department for International Development (DfID), the government of Kenya and the International Disability Alliance.

Three of us with dementia (Peter Mittler, Howard Gordon and Nigel  Hullah) sent in questions but they were not chosen for discussion.

I was diagnosed with Alzheimer’s Disease 12 years ago but I am still me.  Much worse than my Alzheimer’s is severe deafness which makes it difficult for me to use the phone or hear what the person next to me in a noisy restaurant is saying.

I have worked in the disability field since the 1950,  first as an NHS clinical psychologist and then as a university teacher in psychology and education and researcher in the social sciences. I have also been active in the British Psychological Society, most recently in my new role as ‘a psychologist living with dementia’.

My priority for some years has been a commitment to human rights and social justice for all disabled people, particularly those living with Alzheimer’s and other dementias.

I started working with International Disabled Persons Organisations in in 1979 when the UN was taking advice on the 1981 International Year of Disabled Persons and UNESCO was launching a 5-year programme on what we would now call inclusive education.

My most vivid memories come from the founders of the disability movement who insisted on co-production of policy with ministers and officials. Most of the pioneers were men in wheelchairs demanding access to jobs, buildings and documents.  The strapline of ‘Nothing About Us Without Us’ was launched in the 60s and has now been extended to 50 million people living with dementia world-wide.

Life in Alzheimerland is very different.

Most professionals are respected as experts.  Conferences are polite and collegial, despite evidence of deteriorating services and now an NHS and care system on its knees for human and material resources.

The older we get, the higher the risk of one or more age-related illnesses. Some are more at risk than others: it helps to be married and have a family; your risk is lower if you lead an active life, meet friends, eat healthy foods, go easy on the alcohol and take a lot of exercise because the brain needs blood to activate neurons to make connections with other cells.  It also helps if you’ve had a good education and speak a second language.

Being given a diagnosis of dementia can be a traumatic experience.

Some people have cried for weeks or can’t sleep for worry about what is to become of them.  Others are asked to hand over their driving licenses or to stop work and take out a Power of Attorney for when they lose capacity. Many have reported that friends and neighbours cross the street to avoid them because they don’t know what to say. The fear and stigma around dementia leads to social isolation and from there to apathy and depression.

The only global self-advocacy movement is Dementia Alliance International.  

Most Board members are under 65, as are all those who have written books about their experiences – the latest is Wendy Mitchell’s highly readable Someone I used to Know (2017).

Most of the advocacy has come from people with younger onset dementia – around ten percent of the total.

Britain will soon have a million people living with dementia; many more are directly affected by dementia, including care partners and relatives. There will be 75 million by 2030 world-wide and we are already being left behind in the UN’s 17 Sustainable Development Goals.  Much of the increase will take place in Low and Middle-Income Countries where diagnosis is a rarity.

People living with Alzheimer’s don’t usually think of themselves as disabled or as grey panthers.  They want a quiet life and to follow their interests.

Action is needed because the OECD has stated that ‘people living with dementia receive the worst care in the developed world’ (2015).

Alzheimer’s Disease International and the World Health Organisation has estimated that one person with dementia is being diagnosed with dementia every three seconds. The cost of dementia is now $1 trillion.

The Alzheimer’s Society UK used data collected from NHS Trusts under the Freedom of Information Act to establish that the chances of falling while in a general hospital are twice as large as in other over 65s and that thousands are being discharged between 11pm and 7am because the beds are needed by other patients. In this country diagnostic rates vary considerably even within a conurbation the size of Manchester but are much lower in Low and Middle Income countries where the condition is often seen as normal ageing.

Although the United Nations Human Rights Bodies recognize dementia as a cognitive disability, there is little evidence that people with dementia are being consulted or involved by their governments in planning services when a country is implementing the CRPD, as required in CRPD Article 4.3. This amounts to systemic – if unintentional – discrimination by their government.

Over a year ago, the World Health Organisation launched its Global Action Plan for a Public Health Policy in Dementia, together with a parallel plan for Mental Health.  Unfortunately, very few governments have taken any action to use it – and that includes NHS England and Dementia United.

To end on a positive note: here are the recommendations for a Rehabilitation Pathway made by Dementia Alliance International to the CRPD Committee in 2016.

Rehabilitation should begin at the point of diagnosis when the  doctor giving the diagnosis introduces a home visitor who will visit the person or the care couple as the link to community supports and services.

The home visitor can be a health or social care professional who visits the care couple to discuss their priorities.  Their task is to try to arrange support from health and social care from  the voluntary sector. These might include an occupational therapist, physiotherapist, speech and language therapist, clinical psychologist and social worker: it depends on the needs of the care couple and other members of the household.

Utopia?

Not at all: something like this exists in some parts of the country.

These are islands of excellence in a sea of poor or non-existent post-diagnostic support.

Peter Mittler © 2018

[1] Professor Peter Mittler, CBE, FRSA, MA, M.Ed, Ph.D (Psychology);  Clinical Psychologist 1954-1963; Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963-1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968-1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991-1995).  Currently Hon Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.  

References

Mittler, P (2010) Think Global Act Local: A Personal Journey, Bloomington, Ohio and London, Author House.

Mittler, P. (2013) Overcoming Exclusion: Social Justice through Education, Routledge Library of Educationalists.

Wendy Mitchell (2018 ) Someone I Used to Know, London: Bloomsbury.

Organisation for Economic Cooperation and Development  (2015) Addressing Dementia: The OECD Report.

Help us to continue to support people such as Peter. Become a DAI Sponsor or Associate today.

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Jerry. Become a DAI Sponsor or Associate today.

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

Please donate to DAI, so we can continue to support members like Maria and her son Rhys.

Dignity & respect still lacking in dementia care

Today, we are sharing a post of a video made by our Chair, Kate Swaffer in 2013, which highlights too well, what almost all speakers with dementia in Chicago shared. It is rather disturbing that little has changed for people newly diagnosed with dementia in the last 10-20 years, especially at the time of diagosis, and that the lack of education of health care professionals in dementia is still so inadequate.

Some of the terms Kate uses, are not what she would say today, as like everyone, even people with dementia can learn, as well as change their minds. But, too often, dignity and respect is still lacking in dementia care, in hospitals and in residential care.

“This video interview was made for the recent South Australian Dementia Forum held on 5 December 2013. At this event, a large number of experts, health care professionals and consumers, including carers and people with dementia attended to listen, learn, and workshop about how to improve the care of people with dementia and mild cognitive impairment in the acute hospital setting. I hope it highlights some of the challenges we currently face as patients, and assists in helping others know how we would like to be treated, in particular with the same education about our disease as any other illness, and with the same respect and dignity as any other patient. Sadly, the experiences I talked about really happened. Opinions are my own.”

Kate Swaffer © 2013