Category Archives: Human rights

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.

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

No decision about me without me by Emily Ong

Image source: Emily Ong

We are pleased to share this article about legal capacity, written by DAI Board member, Emily Tan Tan Ong,  from Singapore. For too long, the rights and voices of people with dementia have been ignored, on the basis of lacking capacity. Thank you Emily for speaking up for us.

No decision about me without me

A big issue that comes with a clinical diagnosis of dementia is the decision-making ability of the person. Often care partners and family would take on the responsibility of making decisions for the person living with dementia. While this is done with good intention or to make caregiving easier, it is against the rights of people living with dementia.

Section 3 -(1) of the Mental Capacity Act, sets out the following principles:

(2) A person must be assumed to have capacity unless it is established that he lacks capacity.

(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

(5) An act done, or a decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

[UK MCA 2005, s. 1]

As a person who spends most of her working life supporting learners with Special Educational Needs (SEN), I believed that the assumption of incapacity in dementia is a result of assuming that the inability to decide by people living with dementia is a direct cause of their cognitive impairments. It is like the way society assumed the difficulties faced by disabled people are a direct result of their physical, sensory, or cognitive impairments. The inability to make decisions is thus viewed as residing within the person’s cognitive impairments rather than seen as a mismatch between a person’s impairment and the expectations of their environment (UN Convention on the Rights of Persons with Disabilities [CRPD], 2006).

The 5 Principles of the Mental Capacity Act 2005 (Lambeth Council) https://www.lambethsab.org.uk/node/348

When the incapacity is conceived as part of the disease process and unfortunate life tragedy that happens to the person, it influences the way care partners and family members deal with the inability of their loved ones in making everyday life decisions including what to eat or what they want to do.

Take, for example, a person with vascular dementia, might not make a good food choice does not mean the person is incapable of making decisions. He or she might not know or remember that a bowl of ‘Bak Chor Mee’ (Minced Pork Noodles) can be unhealthy because it contains 511 calories per bowl, and if the person is not physically active or has mobility issues then it could easily lead to excess calories, resulting in chronic health problems.

Everyone does make unwise food choices, but we do not come in and take away the decision-making from the person. At most, if you are the spouse, you would nag on your partner, or if you are the child, you would advise and educate your elderly parents on eating well. The same mentality should be applied when it comes to supporting people living with dementia in decision-making.

As stated in Section 3.3 of MCA – a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. Therefore, it is imperative for care partners, whether informal or paid, to ensure that attitudinal and environmental barriers and communication barriers are removed, and practical steps have been put in place to support decision-making for persons living with dementia.

The attitudinal barriers can be in the form of language (verbal and body language) that carries a subtle or direct message of incompetency and incapacity. Over time it is natural for the person living with dementia to believe that he or she is incapable of making decisions, and thus, give up the right to make the decision that is not caused by their cognitive impairments.

The inability to make decisions can happen when someone living with dementia is not able to have the whole picture of the situation because of communication inaccessibility. Section 5.2 of MCA states – a person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). In such circumstances, the provision of other modes of communication would have enabled the person living with dementia to comprehend and make informed decisions.

A common issue for people living with dementia is working memory where it is difficult to hold given information mentally long enough to use it to make decisions. For instance, if I am in a supermarket where the pricing is stated in print form, I can compare the price between two packets of fish and make a decision. Whereas if I am in a wet market, it is so much harder for me to make an informed decision because I will not remember the pricing verbally said by the fishmonger. But my working memory issues should not penalize me as someone not able to make decisions. This is stated in 5.3 of MCA – the fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

Therefore, it cannot be assumed that a person with dementia lacks the mental capacity to make decisions. Many people living with dementia retains the mental capacity to make decisions about their day-to-day welfare such as where to live, what to eat, and what activities they want to engage in. Care partners (informal or paid) and family members should provide the person living with dementia the opportunity to consider the matter in the way he or she understands and make his or her own decision.

#nodecisionaboutmewithoutme

 

By DAI Board member, EmilyTan Tan Ong

Accessibility on Whose Terms

Accessibility on Whose Terms?

By DAI Board member, Emily Ong from Singapore.

“Museums disable me as a viewer. Everything, from the artworks to the explanatory texts, assumes a subject who uses their visual sense as a primary way of knowing, and I am a nonvisual learner who requires a different frame of reference.” – Carmen Papalia.

The quote resonates with me as someone living with dementia, a type of acquired disability. In most circumstances, my dementia condition does not limit my ability to participate fully in life. I am as capable as others without disabilities in carrying out my role as an advocate, advisor, and educator. However, I am often disabled from doing what I want or need to do because the mainstream environment can be disenabling and inaccessible for people like me.

In the past week, I have been working as an advisor with two local public transport providers in making the concourse area of two bus interchanges more enabling and accessible for people with disabilities, not limited to dementia per se. An accessible and enabling environment improves the quality of life for people living with disabilities, and it is a prerequisite for a truly inclusive society.

People with visual impairments like Carmen Papalia and those with Posterior Cortical Atrophy (PCA), a rare form of dementia, would find themselves in a disabling situation when the place they visit does not offer communication access options and prevents them from appreciating the exhibits in the museum. This is a type of ‘situational disability‘ that makes it difficult and almost impossible to participate on an equal basis with others and this leads to exclusion and marginalization.

The UN Convention on the Rights of Persons with Disabilities (CRPD) states clearly that persons with disabilities have the same rights as all other persons. To ensure persons with disabilities can claim their rights, services and facilities must be accessible and provided without discrimination.

© (2002). Michael F. Giangreco and Kevin Buelle. Farside cartoon. Reproduction and communication of this material is permitted under the Fair Dealing provision of the Canadian Copyright Act.

Very often the concept of ‘accessibility is narrowly defined when it comes to environmental design. There is a need to understand that an environment is made up of different domains and they are interconnected.

Take, for example, a person living with Primary Progressive Aphasia, would not be able to get much help at the Passenger Service Counter if there are no options of other modes of communication other than speaking. The person will not be able to benefit fully from the improvement of the physical accessibility of a place if the message cannot get across and be understood between the individual with speech impairment and the customer service personnel.

Good accessibility is built around the principle of an unbroken chain of movement, highlighted by the ‘RECU’ (Reach, Enter, Circulate, Use) concept:

  • Reach: Being able to get to the service you wish to use
  • Enter: Being able to enter buildings
  • Circulate: Being able to move about inside buildings
  • Use: Being able to use the services provided in the building

Let’s take the concourse area of a bus interchange, which usually has high traffic flow, high noise level, lots of information including advertisements, can easily cause cognitive and sensory overload for people like me. Practically every sound goes through my ears without much filtering and you can imagine the struggle I have when I seek assistance over the Passenger Service counter. I struggle to hear what was said to me because of the lack of sound-absorptive materials around the area. Hence, I avoid the Passenger Service at all costs and prefer, to ask for assistance from passing commuters if possible.

There are times when I become overly anxious due to disorientation, words are hard to be articulated as the muscles around the mouth tense up. In such a situation, I would prefer writing over verbal communication. A self-help kiosk that is easy to use and with a friendly interface would come in handy. Being able to access information is a huge part of maintaining independence for any individual.

However, the panel information board at the concourse area of a typical bus interchange is overloaded with information and font size that is too small to be handled by a brain that is cognitively impaired. It would be helpful if transport service providers can have bus route leaflets presented in clear and simple language instead of the ‘one-size fit all’ standard version.

Based on my experience as a commuter who heavily depends on bus and Mass Rapid Transit (MRT) services to get around doing my advocacy work independently, I would say:

  • Reaching the station is no issue because the pathway is well-linked and sufficient signposting to provide directional guidance.
  • Entering the station is no issue because there are built-in ramp and lift that I can take to overcome my visuospatial perception issues.
  • Circulating within the concourse area is usually a challenge for me if there is an absence of useful pictures or graphics to help me form a mental image of the place when I try to orientate and navigate around. Sometimes, the design and location of the facilities within the concourse area is non-intuitive and demands much effort to understand in order to find my way around.
  • Usage of the services and facilities for me is currently satisfactory with slight information inaccessibility. Alternative formats of route maps and guides such as audio maps, and big print maps would be useful and handy. Accessible Help Points buttons like the ones used in the London Underground are helpful in the event someone with a disability needs assistance from Passenger Service but far from the service counter or in the washroom area.

To sum up, accessibility involves removing the physical, communication, attitudinal, and institutional barriers faced by people living with all types of disabilities, including dementia.

However, to address the accessibility issues the presence and involvement of people living with disabilities in the accessibility project is indispensable and has to be on all levels: awareness-raising, dialogue, policy definition, advice, and assessment.

DAI Written Statement to the CoSP14

The 2021 Session of the Conference of State Parties Conference (CoSP) on the Convention on the Rights of Persons with Disabilities (CRPD).

13 June 2021 – 16 June 2021
Agenda item 5
ECOSOC High-level Segment

Statement submitted by Dementia Alliance International in consultative status with the Economic and Social Council.

We provide a Written Statement for the 2021 ECOSOC High-level Segment. Dementia Alliance International is the global voice of people with dementia. We also represent Alzheimer’s Disease International, the global voice for dementia.

The World Health Organisation, in its Global Action Plan for a Public Health Response to Dementia adopted in 2017 has highlighted dementia as a condition causing disabilities and placed the human rights of people with dementia at the core, including implementation of rights through the Convention on the Rights of Persons with Disabilities (CRPD) with empowerment, inclusion and accountability as three of its seven cross-cutting principles.

These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.   This approach to human rights and the CRPD reflects the standard being advocated for at a global level by Dementia Alliance International and Alzheimer’s Disease International.

The COVID-19 pandemic has highlighted past injustices for the more than 50 million people living with dementia, through increasing the spotlight on the existing isolation, stigma, discrimination, and lack of equal access to Universal Health Coverage and post diagnostic care or support.

Dementia is a major cause of disability and dependence globally, yet people with dementia are advised to go home and prepare to die, rather than provided with disability assessment or support.

The pandemic has created a human and social crisis of unparalleled scale, and the outbreak and its multidimensional influences have disproportionally affected persons with disabilities, including people with dementia, and especially those with pre-existing health conditions, people from low socio-economic backgrounds, those in low- and middle-income countries and those living in institutional settings such as nursing homes.

Enforced segregation and institutionalization continues, and many other breaches of human rights have been under the spotlight as never before.

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’, because their rights are not being denied, and the CRPD is meant to be an instrument to ensure the rights of people with disabilities.

Living independently and being included in the community are essential to quality of life and well-being of all, including of persons with disabilities.

In spite of the CRPD, many persons with disabilities experience discrimination and many other barriers and challenges on a daily basis without being able to enjoy these rights and freedoms.

These have not only been highlighted by, but they have been worsened by the COVID-19 pandemic.

It is our right to be treated with dignity and respect, and to equal inclusion, including full and equal access to the CRPD, like all others living with disabilities.

People with dementia are being left behind in the 2030 Sustainable Development Goals and the pandemic has significantly increased isolation and the violation of rights of persons with dementia. care and services for people with Non-Communicable Diseases (NCD’s) globally.

Statement prepared by Kate Swaffer, cofounder & CEO of Dementia Alliance International.

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

Conference of State Parties on the CRPD June 2021

 

We provide the following information on the Civil Society Forum on June 14 and the 14th session of the Conference of States Parties (CoSP) to the Convention on the Rights of Persons with Disabilities (CRPD) takeing place from Tuesday, June 15th through to Thursday, June 17th. Both will be held largely online.

A Civil Society Forum, precedes the CoSP.

  • 14 June 2021: Virtual meeting of the Civil Society Forum

The Civil Society Coordination Mechanism is hosting the Civil Society Forum. This Forum will be an opportunity to highlight current issues relevant to the disability movement and realization of the CRPD in response to and recovery from the Covid-19 pandemic. It provides additional space for civil society to make its own contributions, and allow civil society to share and capture important issues.

Captioning, International Sign, French and Spanish simultaneous translation will be provided.
You can follow the civil society forum at: facebook.com/InternationalDisabilityAllianceIDA/

COSP14 will host Three Roundtables and One Interactive Dialogue with the UN system:

■ Roundtable 1: Protecting the rights of persons with disabilities in armed conflict and humanitarian emergencies
■ Roundtable 2: Living Independently, being included in the community
■ Round Table 3: Right to education: challenges with inclusive education and accessibility during COVID-19
■ Interactive dialogue among States parties, the United Nations system and other stakeholders on the implementation of the Convention

For more information about the COSP14 and the latest programme, please visit https://bit.ly/un-cosp14.

You are welcome to join and watch LIVE the COSP14 through the UN WebTV at http://webtv.un.org/ in all six United Nations’ official languages.

International Sign Interpretation and Closed Captioning will be provided for both events.

 

Dementia and Rehabilitation by Emily Tan Tan Ong

We are pleased to publish the following article written by DAI member Emily Tan Tan Ong on Dementia and Rehabilitation, or rather, the lack of rehabilitation for people with dementia.

Emily mentions in her article that rehabilitation for dementia is not heard of in her country; most other DAI members also report it is unheard of in their countries.

As our CEO Kate Swaffer says: “If we are afforded rehabilitation after a stroke or other brain injury or medical condition, then we have the same right to be after a diagnosis of dementia. It won’t be a cure, and may not even slow the progression, but rehabilition does improve quality of life.”

I keep the patients alive. Rehabilitation gives them Quality of Life. 

(Dr. Tagio Tumas, Ministry of Health, WHO Rehabilitation 2030 Forum, Geneva, July 2019).

Dementia and Rehabilitation, by Emily Tan Tan Ong

With no means to significantly modify the progression of dementia and no cure in the foreseeable future, the rehabilitation approach is an integral part of living positively with dementia.

Rehabilitation, in its essence, is a set of interventions needed when a person is experiencing limitations in everyday physical, mental, and social functioning due to aging or a health condition, including chronic diseases or disorders, injuries, or trauma [1]. It is estimated that at least 1 in 3 people in the world are living with a health condition that would benefit from rehabilitation [2].

Despite this, rehabilitation has not been prioritized and is under-resourced globally.

A possible explanation could be rehabilitation is often perceived as an expensive and specialized service provided at the secondary care level and needed by those recovering from injury or stroke. Hence, the perception that rehabilitation is a luxury health service in addition to primary health care has caused it to be undervalued and ignored when competing demands for resources and investments.

As a result, people living with terminal, progressive health conditions like dementia, which require long-term rehabilitation services, are left behind when rehabilitation is not part of or accessible at the primary health care level.

Earlier on in my journey living with dementia, I was having difficulties with some of the everyday functioning. I was confused at the public transport interchange, overwhelmed with sequential tasks like cooking and baking, and not able to remember the content of the paragraph I just read.

It is like saying, “Sorry too bad you are diagnosed with dementia but there is nothing we can help you to continue living other than attending Adult Day Care Center or Memories Cafe.  One is told that is the way life is going to be, living with dementia, losing one’s functional and cognitive abilities, and independence.

Hence, it is not surprising many newly diagnosed with young-onset dementia go into depression. It is emotionally tormenting to be alive and not able to do things when you still have insights into who you are, what you value, and how you want to live despite dementia.

Rehabilitation in dementia is unheard of in this part of the world where I live.

The” ESTEEM” cognitive rehabilitation program, a partnership between the National Neuro Institute and the Singapore Alzheimer Disease Association is available to individuals diagnosed with moderate young-onset dementia. Hence, I was left unsupported to cope with my cognitive impairment when Cognitive Rehabilitation (CR) interventions would have helped to ease in transitioning my life to the ‘new normal’ with dementia in a more positive and encouraging light.

I came across the GREAT Cognitive Rehabilitation project of Professor Linda Clare from the University of Exeter when looking for ways to self-help myself.

The program uses a goal-oriented approach to enable people living with mild to moderate dementia to “function optimally in the context of their intrinsic capacity and current health state” [3].

However, the GREAT project is delivered by trained therapists who then work together with each individual to formulate meaningful and intrinsically motivated goals that are realistic and potentially achievable. The drawback is that not everyone can access trained cognitive rehabilitation therapists.

The training materials available are for therapists specializing in cognitive rehabilitation. The content was wordy and conceptual, but I am determined to translate whatever information I could obtain into a self-help Cognitive Rehabilitation strategy. I took ages to read, comprehend the principles, and come out with ways to maintain or regain, or in some cases, compensate for my declining functional ability. It was the best thing I have done to sustain my independence and continue living the life I want. Three years down the road with dementia, I still cook, bake, and enjoy reading. I found that the Cognitive Rehabilitation strategies have enabled me to become stronger in areas I didn’t even consider would be possible. I learned to make bread at home, I regained my ability to use a laptop, and more apt at making Powerpoint slides. The best of all, I conquered my inadequacy and incompetency in writing. I now love to write for my blog.

I want to appeal to policymakers to acknowledge the rights of people living with dementia to rehabilitation services and make it part of the primary healthcare system. It is without a doubt that creating an accessible, dementia-friendly neighborhood help to remove external barriers to participation it is even more crucial to enable people living with dementia to participate in everyday life in a manner that is meaningful and purposeful to them. In this way, it also helps to dispel the public perception of incapacity in dementia.

References:

[1] Cieza A. Rehabilitation the health strategy of the 21st century. Arch Phys Med Rehabil. 2019; 100: 2212-2214

[2] Cieza A. et al.. Global estimates of the need for rehabilitation based on the Global Burden of Disease Study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 2006-2017

[3] Clare L (2017) Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med 14(3): e1002245. https://doi.org/10.1371/journal.pmed.1002245

Ps. Don’t forget to register for our next “Meeting Of The Minds” Webinar, Disrupted! Resiliently Reintegrating After Stress & Adversity by Dr Kozhi Sidney Makai.

Assoc. Professor James McLoughlin presents here on rehabilitation and dementia at a DAI Webinar hosted in 2016. It is still a hard sell!

 

 

 

 

 

 

 

 

 

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.

You are invited to DAI’s 7th birthday Cafe

You are invited to the January 2021 virtual DAI Cafe Le Brain to help us celebrate 7 years of DAI’s advocacy and progress.

DAI Celebrates 7 Years

Hosts: Christine Thelker, Wally Cox and Kate Swaffer

Speakers include: Mr John Sandblom, Co founder and Treasurer, Dementia Alliance International, Mr Glenn Rees, Chair, Alzheimers Disease International and Ms Bethany Browne, Human Rights Advisor, International Disability Alliance.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

  • Tuesday, January 26, 2021 (USA/CA/UK/EU)
  • Wednesday, January 27, 2021 (AU/NZ/Asia)
  • Please note this is one event, set in a number of different time zones.

About the Cafe: Every month, DAI hosts a virtual café for its members and their families and supporters, and we have been doing so now for over 7 years!

Each January, we take this opportunity to celebrate our birthday together, and we invite you to join us. From small and humble dreams of global advocacy and human rights, and now, for dementia to be managed as a disability, alongside providing weekly peer to peer support and brain health sessions, we have achieved a lot!

This is your opportunity to hear from others who will share where we have been, acknowledging the work we have done, and dreaming together for our future. Our vision is for all people to be valued and equally included, including people with dementia and our care partners.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

Programme:

  • Introductions and welcome by Kate Swaffer
  • Graeme Atkins performs, Happy 7th birthday DAI
  • Introducing our new Chair, Alister Robertson from New Zealand
  • Board update, Alister Robertson
  • DAI ‘(W)re-creational Officer, Graeme Atkins performs the DAI 7th birthday song, written by him
  • DAI’s global advocacy, and the value of our collaboration with ADI, by Glenn Rees
  • The importance of human rights and the CRPD for people with dementia, by Bethany Browne
  • An overview of the last 7 years (with images), hosted by Christine, Kate and Wally; you will hear from others including co founder Amy Shives and our long term volunteer Sarah Yeates

We will hear from a number of members and guests, inluding some of our co founders, volunteers and other special guests, including:

Mr John Sandblom, who is a co-founder of Dementia Alliance International (DAI), board member and the current Treasurer, and was instrumental in helping to set up DAI.

Mr Glenn Rees, who is the outgoing Chair of Alzheimer’s Disease International, and a former Chief Executive Office of Dementia Australia.

Ms Bethany Browne, who is the Human Rights Advisor to the International Disability Alliance, and formely worked for Human Rights Watch, including writing two reports on the excessive use of chemical restraint in nursing homes in the US and Australia.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

Tuesday, January 26, 2021 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 2:00 pm Mountain
  • 3:00 pm Central
  • 4:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Wednesday, January 26, 2021 ( AU/NZ/ASIA):

  • 5:00 am Perth, AU/Taipei/Singapore
  • 7:00 am Brisbane, AU
  • 7:30 am Adelaide, AU
  • 8:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 10:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER WITH US. WITHOUT YOU, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & OUR GLOBAL FAMILY.

Support people with dementia:

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

THANK YOU