IT’S OUR CONVENTION: USE IT OR LOSE IT? by Peter Mittler

The article below was written by Professor Peter Mittler as a Guest Editorial for the Disability, CBR and Inclusive Development journal,  published in 2012 for people to promote Community Based Rehabilitation (CBR) for all people with disabilities in Low and Middle Income countries.

However, it is now very relevant for the same reason for people with dementia in all five continents. Peter is an Emeritus Professor of Special Needs Education, University of Manchester, UK, and a former President of Inclusion International and UN Consultant on disability and education. He is also a DAI member and the current Human Rights Consultant for both DAI and ADI. Thank you Peter for suggesting we share it here. It has taken a few days, as copying from a PDF means many letters are missing from words, so time has been needed for editorial accuracy. If I’ve missed any, please let us know [KS]!

Abstract

Unless action is taken now, at national and local levels, to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities. Although many governments have signed and ratified the Convention, evidence of actual implementation is an immediate priority, especially in the midst of a global recession.

The scene is now set for governments to bring their policies into line with the principles and Articles of the Convention and to provide regular reports to the Disabled Persons’ Commi ee of the United Nations High Commission on Human Rights. Use of the internet can ensure that accountability is made public and includes the full participation of people with disabilities.

INTRODUCTION

“If the demands of justice have to give priority to the removal of manifest injustice (as I have been arguing throughout this work) rather than concentrating on the long-distance search for the perfectly just society, then the prevention and alleviation of disability cannot but be fairly central in the enterprise of advancing justice” (Amartya Sen, The Idea of Justice, 2009, p. 259).

“The Convention on the Rights of Persons with Disabilities is only as good as its implementation. And even though countries are competing with each other in a race to ratification, its implementation thus far is abysmally poor” (Javed Abidi, Chairperson, Disabled Peoples’ International, 2011).

“We are the leaders of today. We have broken the status quo. And within the next five to ten years you will see persons with disabilities being leaders, being ministers, and ultimately holding the position of president in our countries” (Seray Bangura, Sierra Leone Young Voices, 2012).

Unless immediate action is taken at national and local levels to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities.

The passing of the CRPD into international law in 2008 marks the culmination of decades of struggle by people with disabilities to ensure that their basic human rights as citizens are respected and the barriers to their participation in society are removed. The UN has set the scene and is doing what it can to persuade its member states to translate its principles into practice. However, Disabled Persons’ Organisations and their supporters in civil society must now put pressure on national governments to implement the Convention. The fact that the Convention has coincided with a global economic recession creates a new urgency to turn rights into realities.

THE IMPORTANCE OF THIS CONVENTION

The struggle for disability rights began as part of the wider civil rights movements of the 1960s. In 1980 it ‘went global’ at the now historic Rehabilitation International Conference in Winnipeg, when people with disabilities decided to form their own association which became Disabled Peoples’ International a year later (Driedger, 1989). DPI received strong support from the United Nations which had just launched its International Year of Disabled Persons. Since then, DPI, working with other international disability organisations, has played a leading role in shaping UN policy, starting with the World Programme of Action for Disabled Persons, the Regional Decades and the Standard Rules on the Equalisation of Opportunities for Disabled Persons. The Rules were influential, but lacked the force of law and international accountability now provided by the Convention.

The Convention does not aim to create new rights for people with disabilities but validates their full and equal access to the Universal Declaration of Human Rights promulgated in 1948. It was necessary in the light of overwhelming evidence of their exclusion from these rights, in all countries of the world. This exclusion will continue unless action is taken to implement the Convention.

The Convention was the first to include members of Disabled Persons’Organisations (DPOs) as full and equal participants at every stage of its development, together with politicians, professionals and officials. Their participation is relected in the adoption and application of the social model of disability which highlights the wide range of obstacles confronting the rights of people with disabilities, and ways in which these can be overcome. The international disability NGOs continue to work together as members of the International Disability Alliance, which is actively promoting the implementation of the Convention and has produced detailed guidelines for monitoring and advocacy (IDA, 2010).

The United Nations and the wider international community now recognise disability as one of the major inequalities faced by people in all societies, along with inequalities related to poverty, gender and membership of a minority group. Consequently, the Convention now places an obligation on all United Nations agencies and organisations to ensure that people with disabilities are included in all policies and development programmes, and particularly in the eight Millennium Development Goals in which their needs were not explicitly identified or included in monitoring criteria. Since one-third of the 77 million children still excluded from school are children with disabilities, it is self-evident that the goal of universal free primary education for all by 2015 cannot be a attained if their rights continue to be overlooked.

The United Nations Development Group (2011), which coordinates the work of 25 UN agencies at regional and country team levels, has issued detailed guidelines on strategies and mechanisms to ensure that people with disabilities are included in the whole range of UN-sponsored aid and development programmes from which they have previously been excluded. This document encourages UN country teams to work closely with Disabled Persons’ Organisations. In addition, the UN is also working to ensure that people with disabilities are not overlooked in emergencies and humanitarian disasters, and has published a CRPD advocacy tool kit with particular reference to ensuring support to survivors with disabilities caused by landmines and cluster bombs (United Nations, 2008). The rights of people with disabilities also have to be taken into account by government reports on all other UN Conventions, sent to the O ce of the High Commissioner on Human Rights – for example, those concerning women, children, torture, racial discrimination and civil and political rights (OHCHR, 2010).

The 2013 UNICEF State of the World’s Children report (UNICEF, in press) will focus on children with disabilities and provide up-to-date information and examples of progress in all countries. This follows earlier reports, including Promoting the Human Rights of Children with Disabilities (UNICEF, 2007) and a child-friendly version of the Convention (UNICEF, 2008).

A comprehensive World Report on Disability has been published by the World Health Organisation and the World Bank (2011). The report takes the principles and priorities of the Convention as its starting point and provides a wealth of information with special reference to low and middle income countries. Consistent with the social model of disability and the International Classification of Functioning, Disability and Health (WHO, 2001), it emphasises environmental factors in creating disability, identifies obstacles to the expression of rights and to the development of services, and provides many examples of ways in which these obstacles are being removed or at least confronted by countries at all stages of development. It has been followed by an equally informative world report on dementia (WHO and Alzheimer’s Disease International, 2012), again with particular emphasis on the health implications of an ageing population for middle and low income countries.

CONVENTION PRINCIPLES

The Convention is based on a number of fundamental principles which can be used for purposes of monitoring or accountability: These include:

  • Respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
  • Non-discrimination
  • Full and active participation and inclusion in society
  • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  • Equality of opportunity
  • Accessibility
  • Equality between men and women
  • Respect for the evolving capacities of children with disabilities and respect for the rights of children to preserve their identities.

MAIN ARTICLES OF THE CONVENTION

The core articles of the Convention address substantive issues of importance for people with disabilities of all ages. Each focuses on speci c domains in which barriers to participation are experienced by people with disabilities, and lays down broad principles and policies for their removal. These include:

Women; children; awareness raising; accessibility; right to life; situations of risk and human emergency; equal recognition before the law; access to justice, liberty and security of the person; freedom from torture, cruel, inhuman or degrading treatment and from exploitation, violence and abuse; protection of the integrity of the person; liberty of movement and nationality; living independently and being included in the community; personal mobility; freedom of expression and opinion and access to information; respect for privacy and home and family; education; health; habilitation and rehabilitation; work and employment; adequate standards of living and social protection; participation in social, political and cultural life, recreation, leisure and sport.

HOLDING GOVERNMENTS ACCOUNTABLE

The scene is now set for national governments to be accountable to their own citizens, and for people with disabilities to insist on their right to participate in the process of national implementation.

Since its adoption by the UN General Assembly in 2006, 153 countries have expressed their broad agreement with the principles of the Convention by signing it. The 113* countries that have since proceeded to ratify it now need to be commi ed to a time-tabled plan of action to implement each Article of the Convention. Countries that have neither signed nor rati ed it should be held to account and pressed to do so. Up-to-date information on the status of all countries in relation to the CRPD can be found on the UN and IDA websites.

Ratifying States accept a number of general obligations to:

  • modify or repeal laws, customs or practices that discriminate directly or indirectly against people with disabilities
  • include disability in all relevant policies (mainstreaming)
  • refrain from any practice inconsistent with the CRPD
  • consult with people with disabilities and their organisations in implementing the CRPD.Consistent with the social model of disability the Convention, as well as many existing examples of national legislation, also imposes obligations on both public and private authorities to make “reasonable accommodations” to all relevant aspects of the environment so as to enable people with disabilities to exercise their rights. Guidance documents have provided examples of accommodations that might be considered reasonable and unreasonable (OHCHR, 2007).

MONITORING

Since Conventions incorporate international law, the UN provides a comprehensive framework for monitoring and accountability. Accessibility of the internet ensures that this process can take place in the public domain, rather than in closed committees or official reports. Monitoring tools are increasingly available in accessible language (Inclusion International, 2008; Equalities and Human Rights Commission, 2010; World Blind Union, 2012). Both the High Commission (OHCHR, 2010) and the International Disability Alliance (2010) have published helpful guidelines on the preparation of civil society submissions, stressing that they need to refer to the specific principles and Articles of the Convention in framing their comments.

All ratifying states have to submit regular reports on their progress to the new Disabled Persons’ Committee of the UN Office of the High Commissioner for Human Rights which has overall monitoring responsibility for all UN Conventions. In addition to reports submi ed by governments, the committee is open to submissions by non-governmental and civil society organisations. These are published on the internet, together with the Committee’s own report and recommendations on the degree to which the Member State is compliant with the Convention. Since the Committee’s recommendations are not legally binding, it is important for national organisations of persons with disabilities to use and publicise the Committee’s findings in their advocacy campaigns.

A press release and full report of the Committee’s conclusions and recommendations relating to individual countries can be found on the OHCHR website. The Committee has already published its findings on Peru and Spain and will consider reports from Argentina, Hungary and China (with Hong Kong and Macau) in September 2012. Some sessions can be watched live or viewed via the IDA website, which also includes a link to the Hungarian national disability consortium’s response to the policy of their government.

In the case of Peru, the Committee commended the government for its dra bill on the rights of persons with disabilities, the adoption of a law on sign language and an increase in funding for programmes for persons with disabilities, but expressed strong criticisms concerning forced sterilization as a method of contraception and the fact that 81 % of people with disabilities had no rehabilitation services and only 1.42 % were covered by social security programmes. The Committee also expressed its concern about the forcible use of medication and the poor conditions in psychiatric institutions where some persons had been institutionalised for more than ten years without appropriate rehabilitation services.

The report on Spain commended the adoption of a new long-term strategy (from 2012 to 2020) including objectives over the short and medium term, and welcomed the high percentage (78.35%) of enrolment of children with disabilities in the mainstream education system. Recommendations included measures to ensure the active participation of persons with disabilities in public decision-making processes, including the right to vote at the regional level and the inclusion of children with disabilities at all levels, and a more comprehensive consideration of women and girls with disabilities in public programmes and policies, in order to promote their autonomy and full participation in society and to combat violence against them.

The Commttee has a backlog of reports from Austria, Azerba an, Bahrain, Belgium, Brazil, Bulgaria, Cook Islands, Costa Rica, Croatia, Czech Republic, Dominican Republic, Ecuador, El Salvador, Finland, Germany, India, Indonesia, Mexico, Mongolia, Morocco, Netherlands, Paraguay, Philippines, Poland, Republic of Korea, South Africa, Sweden, Turkmenistan and the United Kingdom. All these reports will be on the OHCHR website and should also be in the public domain at national level. Therefore, there is still time for NGOs in all these countries to make independent representations to the Commi ee.

Optional Protocol

The Optional Protocol, which has so far been rati ed by 65 States, enables individuals or groups of individuals who believe that their rights are being violated to submit a complaint to the Disabled Persons’ Commi ee. In addition, it gives the Commi ee the authority to examine grave or systematic violations of rights under the CRPD. DPOs can use both of these procedures to report on violations of rights under the CRPD (OHCHR, 2010; International Disability Alliance, 2010).

The Committee has received its first complaint from an individual under the Optional Protocol, and supported her objection to a Swedish municipality’s refusal of permission to extend her property for installing a hydrotherapy pool, considered essential to her treatment and rehabilitation programme (CRPD/ C/7/D/3/2011).

AN AGENDA FOR CHANGE

Over the last 50 years there have been many recommendations to implement sustainable policies, designed to support people with disabilities to take their rightful place in society. Although significant progress has been made in many parts of the world, including some of the poorest countries, there is still abundant evidence of people with disabilities being ignored and marginalised everywhere. The Convention therefore provides a unique opportunity for every country to do a rethink about the quality of life of its citizens with disabilities, and to make a fresh start in xing its priorities. This is not only a task for all governments, but also a challenging opportunity for citizens.

Since the 1981 International Year of Disabled Persons, the UN and NGOs have highlighted a number of priority areas which have proved e ective in countries at varying stages of development.

1. Develop a National Disability Strategy

Governments should be urged to create a high-level focal point for disability, responsible directly to the Head of State or Prime Minister, who should publicise their full commitment to promote the rights of all citizens with disabilities and to combat discrimination at every level. These are already working well in some countries, including the Philippines, Japan, Turkey and South Africa.

This group should be entrusted with the development of a Convention Implementation Programme as one element of an overall national disability strategy, with clear targets, time-frames and mechanisms for monitoring and accountability at local levels.

The group must include a representative consortium of national DPOs. These must be granted time and resources to meet in accessible environments before and between meetings, in order to develop a common strategy. It goes without saying that all documents and proceedings have to be accessible to all participants.

In addition to high-level representation from ministries with existing responsibilities, such as health, education, employment and social welfare, other ministries such as nance, housing, transport and justice will also need to commit to a comprehensive national strategy.

Information about the work of this coordinating commi ee should be reported to Parliament and to regional and local bodies, and be freely available on the internet, preferably in an interactive form so that members of the public can express their views.

2. Support People with Disabilities and their Organisations

At the heart of the Convention lies the participation of people with disabilities in the process of reform. This involves much more than inviting them to join commi ees. It calls for support and strengthening of DPOs, and the creation of a climate of debate and discussion of a kind which brought the UN Convention into being in the rst place.

3. Promote Access to Mainstream Services

Each public and private agency needs to conduct an audit of its buildings, facilities and procedures with a view to removing barriers to participation. This can be done with the help of DPOs with experience of access audits based on the needs of people with a wide range of physical, mobility, sensory, cognitive and mental health impairments. These are already active in many places like Malaysia (WHO and World Bank, 2011, p. 176) but could be replicated more widely given the opportunity. Governments should also support the development of access standards for all services and amenities available to the general public, including vocational and professional training.

Incentives for Universal Design should be put in place, whereby provisions for access are incorporated into the original speci cations for pavements, buildings, transport and other amenities. Most personal computers already include basic access so ware, but people with disabilities should be able to receive additional so ware needs free of charge.

4. Improve Services for People with Disabilities

Global surveys such as those carried out by WHO (2007, 2011) make it clear that no country can be satis ed with the quantity or quality of the supports and services provided for its citizens with disabilities.

While access to mainstream services is fundamental, many people with disabilities will always need supports and services to use them. These include not only low vision, hearing and mobility aids, but also personal support for people with intellectual and mental health impairments, to help them become more independent as well as contributing members of their community.

5. Develop Appropriate Quality Assurance Processes

There have been reports of poor quality services, inhumane treatment and abuse of people with disabilities even in countries with highly developed provisions. This is despite elaborate quality assurance mechanisms and inspections by organisations funded by government or professional bodies.

Quality assurance is essential but a balance has to be struck between procedures and guidelines agreed between service providers and their clients on the one hand, and national standards imposed from the centre on the other. Accountability must be to individual service users who have to be at the centre of decision-making, and must be supported if they wish to make a complaint. Organisations of people with disabilities are increasingly involved in quality assurance and accreditation processes, but should be more fully supported in evaluation of services and supports.

Two very different but complementary approaches to quality assurance have just been published. A new WHO Qualityrights Toolkit (WHO, 2012) provides detailed guidelines for the assessment of a range of mental health and social care facilities in all countries, by NGOs and human rights organisations as well as accreditation agencies and government bodies. Assessments are carried out under ve broad thematic headings, each based on relevant articles of the CRPD. For example, theme 5 focuses on Article 19 which deals with four components of ‘the right to live independently and be included in the community’.

In contrast to evaluations which focus on services and sta , Verdugo and his colleagues (2012) have come out with a proposal to assess the impact of the Convention by asking those whom it is intended to bene t about their Quality of Life (QoL), drawing on three decades of international research in which QoL measures have been developed with populations of persons with disabilities, the elderly and the disadvantaged. Their paper demonstrates that the eight domains identi ed by QoL research can be both conceptually and operationally related to speci c Articles of the Convention (Verdugo et al, 2012).

6. Develop a National Training Strategy

Since many staff lack appropriate quali cations, the training and retraining of sta at all levels can be seen as an investment in human rights.

A national and regional state development and support strategy has been shown to be an indispensable component of reform. Priority should be given to locally-based sta who are in daily contact with persons with disabilities and their families. Education, health and community workers may need support in extending their skills to these people, or may be prevented from doing so by discriminatory practices or a itudes. They in turn need support from more experienced itinerant multi-disciplinary teams who themselves need access to refresher courses to update their knowledge and skills and to provide leadership in changing outdated attitudes and practices. National or regional centres for advanced study, research, training and dissemination are also needed.

People with disabilities can make a major contribution towards training, but to do this systematically they need to be paid, supported and treated as experts in the same way as other contributors.

Community-Based Rehabilitation

CBR is more relevant than ever in the light of the new imperative to implement the Convention. It is now the accepted strategy in 90 countries, providing supplementary training to health, education or social welfare sta who already work in the community but o en lack the con dence to extend their skills to people with disabilities. WHO has recently published radically revised CBR Guidelines on the basis of experience and evaluation in many countries (WHO, UNESCO, ILO & IDDC, 2010).

Equally important is a well-designed strategy of providing awareness, information and con dence to people working in general community services who may have only occasional contact with people with disabilities but whose a itudes and actions are critical to the lives of these fellow citizens. This includes the whole range of health, social welfare and education professionals, as well as public o cials, the police, the judiciary and the media.

7. Public Awareness

Perhaps the biggest obstacle to the participation of people with disabilities is society’s persistent under-estimation of their ability to do so. Implementing the Convention provides an opportunity to promote a more inclusive society (Mi ler 2010, 2012).

People with disabilities are their own best ambassadors, especially when the general public becomes aware not only of their presence but also of the contribution that they can make to the community once barriers to their participation are removed.

Full involvement of the media is essential at a number of levels. These include awareness-raising about the rights, abilities and achievements of people with disabilities of all ages, in contrast to portrayals which re ect a charity or welfare model. The media should be provided with accurate and up-to-date information about government policy and its progress in implementing the UN Convention in ways which will have a direct and positive impact on the lives of people with disabilities and their families.

8. Think Regionally

The power of regional networks and partnerships has been demonstrated in the UN Decades of Disabled Persons, with the Asia-Paci c region launching its third decade in 2013. All are strongly supported by UN regional o ces and by the UN Development Group. Most of the international disability NGOs such as DPI, Inclusion International, World Blind Union, and World Federation of the Deaf also have a strong regional base and should now be fully supported by UN regional o ces. The European Union and most of its member states have rati ed the Convention and is in dialogue with a very active European Disability Forum.

CONCLUSION: CONFRONTING THE ECONOMIC CRISIS

Seeing an agenda for change in the midst of a world economic crisis is likely to meet with resistance.

We are used to governments – and even the United Nations in earlier days – using phrases such as ‘within existing resources’ or ‘as resources become available’, which is usually an excuse for doing li le or nothing. Such language is unacceptable where fundamental human rights are concerned. Few politicians would now say that there is no money for the education of girls, so how can lack of resources be used as a justi cation for the exclusion of girls and boys with disabilities from education?

The UN knows that its 190 member states are at vastly different stages of development and that implementation of this Convention will require resources, especially for countries with limited provision for all its citizens. That is why the Convention speaks of the need for evidence of “progressive realisation” of its principles and policies. That means targets, time-lines and accountability. Good intentions or even legislation are not enough.

The Convention was drafted by realists and ratified by politicians in full knowledge that it had resource implications. However these should not be exaggerated. Many resource-poor countries have made remarkable progress by harnessing community support and by judicious investment in human resources, including people with disabilities themselves. Resources tied up in institutional provision can be responsibly diverted to community services. People with disabilities, considered as ‘the poorest of the poor’, have become economically active as a result of job creation and start-up loans.

People with disabilities are not asking for a disproportionate share of resources but they do want to be given opportunities to develop what the economist-turned- philosopher Amartya Sen has called their ‘individual capability’ – a wish expressed by the novelist Katherine Mans eld many years earlier when she wrote, “I want to be what I am capable of becoming”. Such a wish is universal but is particularly apt for people with disabilities.

* 173 countries have now ratified the CRPD

You can download the article as a PDF here: UN Convention_Use it or Lose It_DCID July 2012_Peter Mittler (2016_07_08 11_51_56 UTC)

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We need to ‘Think Outside of the Box’ by John Quinn

A few weeks ago at the ADI2017 conference in Kyoto, DAI and DAAT member John Quinn  gave a great presentation  We Need to ‘Think Outside the Box”, especially in relation to rehabilitation enablement and dementia. Thank you John for allowing us to showcase it here.

His power point slides can be downloaded here  We need to ‘Think Outside of the Box ’_John Quinn_ADI Kyoto2017 and his full speech notes are below:

“A friend of mine was diagnosed with Fronto-Temporal Dementia. He used to be a truck driver and tinkered with cars and engines most of his life. But only 18 hours after he had MRIs etc that resulted in his diagnosis, he lost his licence. He felt that his whole life had shattered. At the time, he was in his mid 40s, with four children. His wife had to return to full time work to continue paying off the mortgage and to support the family. But by the time he was 50 years old, when his youngest child was 7 years old, he was placed into a Care Facility, because there was no one at home to care for him. The average age of the other residents was about 85 years old. He felt hopelessness… and also a failure, because he couldn’t provide for his family.

There was no immediate rehabilitation for him, however; soon afterwards, his friend told him about a group of men who were rebuilding an antique truck. Years later, they still catch-up every week to work on this project together. Now he is proud of what he is achieving albeit small steps. In time, the organisers hope that there’ll be a restored, functioning, antique truck available for street parades, TV advertisements and movie sets.

This is an example of what rehabilitation might look like. OR is it enablement? OR… is it empowerment?

In some health areas, for example with various forms of addiction, the word enablement has different connotations than in the Dementia arena, so we must be mindful of the meaning of words here, too. Also, I’ll later refer to how I felt disempowered by others, then later with time and unexpected support, regained the sense of feeling empowered. Some of us who live with Dementia are advocating for the correct use of language in the media and within our Communities. Perhaps here is another area where better awareness of language can improve our lives. Whatever the correct word is, the result should be better outcomes for people living with Dementia. Here in this context, for simplicity, I’ll use Rehabilitation and Engagement interchangeably. However, it will only be effective if it empowers us.

In an ideal world, some types of rehabilitation relevant to the person’s current life and the personal symptoms of Dementia should be offered at the time of diagnosis. Everyone has a Right to Rehabilitation to his or her changing abilities, BUT let’s not dismiss ANY type of rehabilitation. We need to ‘Think Outside of the Box”, for the best outcomes to empower us. Everything with value will be valuable!! Who determines what is valued? I believe that it must be the person with the diagnosis in the first instance. This type of conversation and the ensuing negotiation is relevant regardless of the age of the person living with Dementia.

However, it is more important when someone young is diagnosed, as there is an emerging realisation that when a younger person is diagnosed with Dementia at the earliest opportunity, there will be a longer period of successful engagement with his or her current lives. Immediate support and contact with someone who can guide the person living with Dementia and their family through this tumultuous life-changing period, would maintain some hope for the possibilities for the future; and, feelings of being valued as a person who can still contribute to their family and society.

At least in my own case, I believe that I still could have had a sense of purpose and self esteem… But I lost them when I lost my career. The career that I loved and was respected in, had taught me skills and knowledge for 35 years. Yet suddenly, in 2008, I not only couldn’t do it due to my symptoms, I didn’t have the opportunity to return to it with support or adaptations post diagnosis.

Interestingly, for the past two years, with encouragement and lots of support, I’ve been able to use those skills that I learnt throughout my lifetime in my career… in my advocacy. This advocacy has also opened many new pathways and opportunities for me, that I couldn’t have envisaged, and I value that. Through my advocacy, I’ve met new, genuine lifelong friends; I’ve had the opportunity to meet with people who inspire many; and I’ve been to places that I wouldn’t have considered before. I’ve regained a passion, a focus and a purpose again. Prior to this, I’d felt that everything about who I was, had been taken away from me…..by Dementia, and by the responses of those who could have offered support if they’d only looked at me as the person who I was…………not just as Dementia.

I can’t learn new things easily. I get lost in the process and if I do manage to learn new things, it takes an enormous amount of time and effort on my part, and patience by others. However, I still had, and still have, many skills and expertise in particular areas that the post-diagnostic model forgot to address or encourage. In my case I was an educator…..a School Principal or Deputy Principal of large Primary Schools. Therefore, I spent my adult life in education, learning new things and mentoring others; encouraging both the students and fellow educators to engage in learning skills and knowledge for a successful life. In other words, life long learning

But who else was I? What else was I passionate about?

I’ve always been a caring person and a family man.

But also, what comes to mind is my interest in active participation in sports. I not only trained and encouraged the students in a number of sports, at the school that I was at, but I also enjoy being a spectator of many sports.

During the last 25 years, I’ve run 3 marathons, about 20 half-marathons, a triathlon, and 30 charity fun runs, so as you can imagine I’ve always been reasonably fit. However, I have also participated in many challenging feats in recent years since my diagnosis, such as the Great Wall of China half-marathon, and climbed Mt Taranaki in New Zealand. In addition, since I started being involved with advocacy, I’ve also used my athletic ability to raise much needed funds and awareness in 2 separate challenges…..cycling through Vietnam and Cambodia after buying a bike when I couldn’t drive any longer; and walked our second Camino de Santiago, 825 kms from France across the top of Spain. Whist I could do the physical challenges they wouldn’t have been possible without the support of others, particularly my partner Glenys who did the planning, organisation and problem solving to ensue that I was able to successfully undertake these events.

So each one of us already had expertise, interests, and passions prior to our diagnosis, which if acknowledged and carefully nurtured and encouraged, can enable us to remain independent and interested in engaging in our future lives, albeit with some adaptations and support where necessary.

We need to look beyond the deficit model of what we can’t do, and instead look at the skills and knowledge that we already have. Board-certified Internist and Geriatrician, Dr Allen Power agrees…In his book ‘Dementia Beyonds Drugs’, he states…“Although there are cognitive deficits, many complex abilities are already preserved, which should be identified and cultivated”…..Others in the medical field; allied health professionals; Governments and organisations; and, our family and friends, need to get on board with this concept to encourage us to maintain our skills; and, provide individualised personal programs and career support, so that we can continue to be independent for as long as possible.

I already know what I can’t do. I knew about them years before I received an accurate diagnosis. I’m reminded of them daily when I get confused or frustrated, knowing that everyone is thinking at a different speed and level. I am particularly reminded of them, when I travel; have the rare late night with my son at the football; or, after the many social interactions that occur throughout each day. And strangely, I’m subtly reminded of them when some people challenge my diagnosis, because I can interact with others and I’m reasonably fit, therefore don’t look like I have Dementia. However, they don’t see how I can’t function for hours, after engaging in most activities.

Please don’t misunderstand me though. The type of rehabilitation that people usually think of, is also very important, for example, Occupational Therapy, Speech Therapy, Physiotherapy. However, when it’s Dementia, aren’t these therapies really enablement? I’m never going to rehabilitate back to close to my former self, as I may have after a stroke or heart attack.

In about 2011, after my diagnosis, Glenys said to my neurologist that she was aware that there are Speech Therapists who specialise in rehabilitation after a Heart attack or Stroke. She questioned whether there was one who specialised in Dementia, to hopefully provide some strategies and knowledge that we didn’t have, that might assist us in our daily communication……His reply was that he’d never been asked that question before.

There have been some changes though. This time last year, we were asked to give the Consumer Perspective to the Australian Federal Minister for Health on a new government document for People with Dementia. This document has some excellent points enmeshed in the 109 ‘Principles of Care’.

There are two references to accessing Speech Therapists…..But we also need speech/language therapy for people who have word finding, processing problems, or other language concerns etc, like I have?

The medical profession needs to consider authentic rehabilitation which is vital for younger people living with dementia or those early in the dementia process. Are some attitudes because dementia is a terminal condition for which there is no cure? I don’t know…..However, through my involvement on a national committee where up to 40 different research activities are currently happening, I’m aware that there’s some good, innovative research that includes a focus on empowerment. So there’s emerging hope for a change in attitudes.

I have personally done a little research on what can impact on the progression of Dementia and what keeps our brains healthier…..things like the effects of music; and learning new languages and skills. As a result I’ve formed an acronym….It’s my N.A.M.E.S……names….N for Nutrition; A for Attitude and Acceptance; M for Mental activities, Music and Meditation; E for Exercise and Enjoyment; and S for Support, Sleep, Socialisation, and Setting Goals. Some of the activities that I engage in for my NAMES, include, learning Spanish; doing crosswords with my non-dominant hand; volunteering each week; advocating; writing to the Editor of the local newspaper; and, writing a blog. My N.A.M.E.S. keeps me on track to do what I believe will help me.

I want you to consider these questions. What value do our existing skills hold? What value is there in learning through experience rather than in isolation, for example, in a one-on-one class with a therapist? What value do we place on participation with fun, social engagement? How can we be empowered through support and opportunity to live as independently and as fulfilling a life as possible? I’ll finish with another quote by Dr Allen Power, in “Dementia Beyond Drugs”. Well-being is not dependent on cognitive and functional ability and should be maximised in all people. There has to be a paradigm shift in the way we view people with Dementia

Thank you.”

World Health Organization adopts Global Action Plan on dementia

(Left to right) Professor Peter Mittler, CBE, Human Rights Consultant to DAI and ADI, Paola Barbarino, CEO, ADI and Amy Little, Executive Lead, GADAA

The World Health Assembly today adopts the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva.

We are delighted DAI member and Human Rights Consultant, Professor Mittler CBE arrived on Friday and took  the baton from me to represent us all, along with Amy Little, Executive Lead of GADAA. Paola Barbarino, ADI’s CEO was privileged to make a statement on behalf of  ADI and although it is not in the text of her statement, in the video recording of her speech, she specifically thanked DAI and GADAA for our contribution to this very important work.

ADI stated in their media release, “The plan opens a new era in understanding, care and treatment – but governments must act now. The plan acknowledges that dementia is not a normal part of ageing and that those affected should be helped to live as well as possible.”

Listening to the speakers on the live feed broadcast, I have felt that the global community and governments are taking this very seriously, and feel hopeful change will take place. DAI does have some reservations (read our response below), as do many others on the human rights elements of the plan, and how this plan will be implemented,  evaluated and monitored. Feeling optimistic…

The following is DAI’s full response to the Global Action Plan for a Public Health Approach to Dementia:

We wish to applaud and recognise the leadership of Dr Saxena and Dr Saxena and their team, and also that of Dr Margaret Chan at the World Health Organisation. We greatly value their vision in working on this plan, the process of consultation with all stakeholders, and their efforts to provide this plan in record time of approximately six months. It is a plan which seeks to meet the needs of people with dementia, and their families.

At the side event last week co hosted by DAI, ADI, GADAA and the Swiss Government, I was asked why a global action plan has been so important to me, and in my speech, this is one of the things I said;

“We need this plan because care is failing, and research for a cure is failing.”

With regard to the global action plan, whilst we are delighted it has been adopted, DAI wishes to ensure Health Ministers are aware that people with dementia and their care partners are rights bearers in the 173 Member States legally committed to the UN Convention on the Rights of Persons with Disabilities by ratification.

This was reflected in the WHO’s First Ministerial Conference in 2015 when Dementia Alliance International (DAI) included Access to CRPD as one of its demands. It was later followed by a rights-based resolution presented by Alzheimer’s Disease International (ADI), reflected in the first of the General Principles in the Director’s Concluding Call for Action.

Within the Global Action Plan for a Public Health Approach to Dementia, human rights, empowerment and accountability are characterized as three cross-cutting principles.

Ten years after the adoption of the CRPD by the UN General Assembly, these principles cannot be realised without full commitment to the General Principles and 33 Substantive Articles of the CRPD and its Optional Protocol.

This is also reflected in the WHO’s Global Disability and Development Action Plan, its revised Guidelines for Community-Based Rehabilitation and in its new Quality Rights Indicators for Mental Health (including dementia).

All Member States who have ratified the CRPD will be aware of its precise requirements for citizens with other disabilities. These include an obligation for;

“States Parties to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations… in the development and implementation of legislation and policies to implement the present Convention” (Article 4.3).

Ten years after the Convention, States Parties have provided little evidence of including persons with dementia in its implementation or monitoring. This may reflect a widespread perception that people with dementia are not rights bearers under this Treaty, and could also be seen an example of systemic discrimination, although not intentional.

We must always remember, people with dementia are fully recognised by the UN as CRPD rights bearers.

Furthermore, Health Ministers must have been involved in the response of their governments to the CRPD Committee in relation to people with sensory, physical, intellectual, mental health, cognitive and other disabilities.

Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.

This year, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dement is now described in UN documents as a cognitive disability.

This issue was also discussed at the 2016 UN Social Forum on the Convention, particularly at a session on Under-Represented Minorities, which included DAI. The UN Special Rapporteur on the Rights of Persons with Disabilities chaired the session in the presence of the UN representative for all Geneva-based UN agencies.

The 1948 United Nations Declaration of Universal Human Rights and all subsequent Human Rights Treaties can now enable the 50 million people living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

It is pertinent to remind us here, that 67 years after the 1948 UN Declaration, in 2015 the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response concluded:

“Dementia receives the worst care in the developed world.”

All of civil society must work towards changing this, and there is a distinctive role for the WHO as Secretariat to the Plan to “offer technical support, tools and guidance to Member States”.

We therefore assume that, in the next phase of implementation, the WHO will ensure that Member States use the accountability framework of the CRPD as set out in Cross Cutting Action 10 (a) of the Plan.

We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

Finally, it is now up to all of us to campaign and work together collaboratively, to ensure all people with dementia and our families are treated with the same rights, and equal access to health, disability support, dignity and health care, and are included,  the same way as every other person in society.

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

The 70th World Health Assembly 2017

Opening of the 70th World Health AssemblyThe 70th

As one of eight co-founders, and current Chair and CEO of DAI, I’ve been in Geneva this last week attending the 70th World Health Assembly (WHA). Professor Peter Mittler arrived yesterday as well.

The theme this year and a brief statement about what the World Health Assembly is about is below, and you can read much more about it on the WHO website, via the link of the title.

Health throughout the Life-course at WHA70

“The World Health Assembly is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The main functions of the World Health Assembly are to determine the policies of the Organization, appoint the Director-General, supervise financial policies, and review and approve the proposed programme budget. The Health Assembly is held annually in Geneva, Switzerland.”

At this years World Health Assembly, the dementia community anticipate the Global Action Plan for a Public Health Approach to Dementia will be accepted at the WHA.

As The Global Action Plan is item 15.2 on the agenda, we have had no control of when the item will come up, and had hoped it would be on Friday, in order for us to witness this historic moment. It is one that people with dementia and advocacy organisations have campaigned on for many years.

DAI specifically campaigned for the plan to include a human rights based approach, so luckily, athough I cannot be here, Peter will still be here.  Although there is little evidence of human rights in the Final Action Plan, you can read our response to the Draft.

This was the announcement from Day 1 of the election at the World Health Assembly of Dr Tedros Adhanom Ghebreyesus as new WHO Director-General. I was pleased to be in the main Assembly hall to witness this, at the opening of the WHA.  You can also read many of the updates about the progress of the event on the WHO website about the progress and sessions held each day.

Throughout the week, I have attended many side events, including two hosted by the Non Communicable Diseases (NCDS’s) Alliance. Whilst dementia is a NCD, it was not mentioned once during these events, even though every risk factor for almost all of the other NCD’s is also a risk factor for dementia.

One side event I attended, “World Economic Forum” was is a very sobering session, as most of the panellists said our health system is broken around the world, and it is much worse for women. The gender bias makes this worse.

There are almost 30 events like this during the WHA, but the Chair of one of the Side events said quite clearly, that too often people go home, back to their jobs and nothing changes. He continued by saying too few people are TAKING ACTION, and there is also a general bias against women which often results in them being denied care,  because as women, they are treated as if their symptoms are not real.

On top of that, all too often, dementia remains the elephant in the room, in part due to people stating it is covered in mental illness. Dementia is not a mental illness, and as such, needs to receive its own specific attention, and we remain hopeful the Global Action Plan for a Public Health Approach to Dementia  will help ensure this.

Hopefully we will be able to announce its adoption early next week.

Kate Swaffer

DAI and ADI continue to work together

Following a DAI, ADI, GADAA and Swiss Government Side event last night at the 70th World Health Assembly in Geneva, I was also able to sign the Memorandum of Understanding (MoU) between DAI and ADI, and this photo is of the new CEO, Paola Barbarino and  me signing it. This means the two organisations will continue to work in collaboration, but autonomously, as sister organisations for the benefits of people with dementia and our families, and ensures we have sponsorship to support people with dementia through DAI.

These are my speech notes for the Side Event mentioned above: 

“NEW OPPORTUNITIES FROM THE GLOBAL ACTION PLAN ON DEMENTIA”

Distinguished guests, ladies and gentleman

People with dementia greatly value the global leadership of  Dr Saxena, Dr Dua and Dr Margaret Chang and their team, in meeting the needs of people with dementia providing this World Health Organisation “Global Action Plan for a Public Health Approach to Dementia” which we hope will be accepted at the WHA tomorrow or soon after.

I was asked to discuss why a global action plan has been so important to me, and was also given the brief to be challenging. Of course, that is not difficult for me.

In reality, we need this plan because care is failing, and research for a cure is failing.

In representing the global community of people living with dementia, although my own experience is unique, I have been campaigning for human rights based approach to dementia for many years. What this means is a whole of health care approach, and support for disabilities to maintain independence for as long as possible, with educated health care workers who provide optimal care that includes rehabilitation, and dignity for all people.

We wish to state today that we are concerned the Global Action Plan provides little evidence of using the UN Convention on the Rights of Persons with Disabilities to underpin the policy, and therefore ask that we all work together to ensure human rights for all, including people with dementia.

People with dementia are fully recognised by the UN as rights bearers under this treaty, which means that the governments of the 173 Member States who have ratified the Convention have been held to account for their inclusion by the UN Human Rights Bodies since the Treaty came into full operation in 2008.

We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

We will continue to advocate for governments and all members of civil society to work towards ensuring the human rights based approach to dementia will be reflected in their national dementia strategies as we work together to implement this plan in society to ensure a higher quality of life for people living with dementia and our families.

Thank you.

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

Please note, I only had three minutes as part of a panel, so was unable to give a more complete response from DAI to the Plan.

New Opportunities from the Global Action Plan on Dementia

A side event at the 70th World Health Assembly

25 May 2017 | 17.30–19.30 Hotel Intercontinental, 7–9 Chemin Du Petit-Saconnex, Geneva

We are delighted to invite you to attend a special side event chaired by Tania Dussey-Cavassini, Vice-Director General, Ambassador for Global Health, Swiss Federal Office of Public Health and Paola Barbarino, CEO of Alzheimer’s Disease International.

This event will feature an expert panel from governments, the World Health Organization (WHO) and key stakeholders, to encourage discussion on the opportunities from the WHO Global Action Plan on the Public Health Response to Dementia 2017-2025 submitted for adoption during the 70th World Health Assembly.

Nearly 50 million people live with dementia worldwide and this number is growing by 9.9 million each year – the equivalent of a new case every 3 seconds. Momentum is beginning to build through collective working on research, policy making and community action to find a cure and effective support for those living with the condition. Global interest in dementia is growing, with comparisons drawn to the early stages of global movements on HIV/Aids and cancer. However, there is still a long way to go.

We believe that this event will be of high importance to those attending the Assembly from around the world and will be an additional opportunity to strengthen implementation of this key Action Plan, and the development of national plans on dementia globally.

This event is co-hosted by Switzerland in partnership with Alzheimer’s Disease International (the umbrella organisation of 90 Alzheimer associations worldwide), Dementia Alliance International, and the Global Alzheimer’s and Dementia Action Alliance (a broad network of international civil society organisations seeking to champion global action on dementia).

The provisional list of speakers include Dr. Naoko Yamamoto, the Assistant Minister for Global Health and Health Industry Strategy from Japan,  the Minister of Health from Indonesia, Dr Shekhar Saxena or Dr Tarun Dua from the WHO, Amy Little from GAADA and Kate Swaffer representing Dementia Alliance International. The full program is still being finalised, but it will be a full program with a lively Q & A session at the end.

Dementia and disability rights #DAW2017

The last few years, in particular for people with dementia representing themselves and since the WHO First Ministerial Conference on Dementia in March 2015, the pace of the activity towards a human rights based approach to dementia that also includes full access to the CRPD and other Conventions has been a major focus of DAI. Our newly appointed Human Rights Ambassador Professor Peter Mittler CBE presented last October in Geneva at the Social Forum, and his speech then is as relevant today as it was then. Next week, at the World Health Assembly being held at the WHO in Geneva, the Global Action Plan for Dementia ia expected to be voted in. For now, read Peter’s speech notes from last October as they explain well why people with dementia are pursuing disability rights. Thank you Peter.

Social Forum, October 3-4, 2016 

Professor Peter Mittler CBE

Side Event: Under-represented groups of persons with disabilities

By Professor Peter Mittler CBE, University of Manchester and Human rights Advisor to Dementia Alliance International

“Thank you for giving me this opportunity to speak about the human rights of people living with dementia.

I’m the Human Rights Advisor to Dementia Alliance International and I’m here because 50 million people with dementia world-wide have been excluded from the CRPD by governments legally committed to it through ratification.

DAI was created in 2014 for the main purpose of achieving our human rights through the CRPD. All of us have a medical diagnosis of dementia. We now have 2,500 members in 38 countries and communicate through the internet and social media, run eight weekly support groups in different time zones and provide seminars led by our members or by leading professionals, researchers and policy makers.

Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This may not be intentional but reflects a wide-spread perception that dementia is an illness, not a disability and therefore the responsibility of Ministries of Health rather than across government. This could be considered as an example of systemic discrimination against millions of people.

Furthermore, several countries and two regions -Europe and Latin America- have launched dementia strategies which don’t appear to have drawn on CRPD Principles and Articles.

WHO takes the view that dementia is the biggest Public Health challenge facing every government and makes fuller use of CRPD than any other UN agency. Its 2014-2021 Global Disability Action Plan fully reflects CRPD Principles and Articles, as do the revised Guidelines for Community-Based Rehabilitation – clearly highly relevant to people with dementia in Low and Middle Income Countries. Its new Quality Rights Indicators are also built on five relevant CRPD Articles.

People with dementia are already being Left Behind in the 2030 SDGs, now being renamed Action 2030. This reflects the absence of the dementia world from the UN global consultations which resulted in the commitment to Leave No One Behind.

The fact that we all live longer than our grandparents means that the number of people with dementia will treble by 2050. The rate of increase will be greatest in Low and Middle Countries, most of which have very limited services, not even diagnosis.

People with dementia face one form of stigma or another in every country. They have been accused of witchcraft and bringing shame on their families, chained to trees and even burned alive. Even in China, India and other countries, the tradition of respect and provision for older people is being eroded by younger people flocking to cities in search of work.

AN OECD study of 37 High Income Countries has concluded that “dementia receives the worst care in the developed world”.

People with dementia don’t like being called ‘sufferers’ but they do suffer from poor services and lack of support to enable them to continue to participate, as they have done all their lives before diagnosis. They also suffer from the social isolation that follows a diagnosis of dementia when friends and family members stop visiting because ‘they don’t know what to say, perhaps out of fear that they too might be diagnosed with dementia or that they might have to support their relative or provide financial support for residential care.

Politicians, the press and even top level researchers and the leaders of some national organisations working for people with dementia talk about ‘demographic time-bombs’, ‘tsunamis’, ‘disasters waiting to happen’ and a ‘world without dementia’. Would anyone today talk about ‘a world without Down’s Syndrome’?

Dementia Alliance International has gone from strength in the last two years not only because new members are joining every week, but because we have taken our demand for human rights to a high level.

In March 2015 our co-chair and founder Kate Swaffer, went to the World Health Organization’s first Ministerial Conference on dementia to make three demands to WHO and 80 Health Ministers at the Opening Ceremony: full and equal access to CRPD for people with dementia; post-diagnostic support and for research on care to be on a par with research on cure.

The following year, Alzheimer’s Disease International adopted a human rights policy which includes access to CRPD and other Conventions for its 85 national societies, in cooperation with DAI. During the Social Forum, we could identify with the experience of other international, regional and regional associations of disabled persons. Words common to all of us included stigma; multiple discrimination (in our case on grounds of old age and gender) invisible disabilities; reasonable accommodation. For people with dementia, being supported to live for as long as possible in the community is particularly important: that’s why we contributed to the UN General Day of Discussion on Article 19 earlier this year.

So thank you for inviting me because until recently, disability and dementia appeared to be on two different planets, each aware of human beings on the other planet but unable to communicate. In the last year, people living with dementia have attended UN meetings, met the CRPD Committee, taken part in the annual Conference of States Parties and this Social Forum.

We want to be part of the global disability movement because we share many of the obstacles to inclusion.”

Peter also wrote an excellent piece for Independent Living recently, DEMENTIA AND HUMAN RIGHTS, BY PROFESSOR PETER.

Introducing the Three Nations Dementia Working Group #DAW2017 Day 3

Three Nations Dementia Working Group

Ken Clasper is a friend and member of DAI, who has also been a long time advocate for people with dementia in the UK, and who is an Ambassador and Dementia Advocate with the Lewy Body Society.  He  is diagnosed as having Younger Onset Lewy Body Dementia, and has “learned to live a new life doing things to help others with the illness”. Ken also says he is “honoured to be a member of Dementia Alliance International”.

His blog yesterday proudly announced the launch of a new Dementia Working Group, and we wish to congratulate the Alzheimers Society UK for supporting this group, as well as the inaugural members of this group. We are thrilled to be able to announce it here as well, as it adds to the every growing list of Dementia Working or Advisory Groups around the world. We are honoured Ken is a member of DAI, and extremely proud to know him, and many of the members of this exciting new Dementia Working Group many who are also members of DAI, Chris Roberts having also been a past Board member.
The image below is from Ken’s website where he states: “We have one member from each of the Alzheimer’s Societies 12 Regions”, and who are listed below. Congratulations to you all.

Members (not in order of appearance in the photograph)

Chris Roberts,  North Wales,  and   Linda Willis,  South Wales 
Danny Brown and Liz Cunningham, Northern Ireland
Ken Clasper,  North East England
Joy Watson, North West England
Wendy Mitchell, Yorkshire and Humberside
Shelagh Robinson, West Midlands
Alex Preston, East Midlands
Peter White,  East England
Hilary Doxford, South West England
Keith Oliver, South East England
Dianne Campbell, London

See the list below of the growing local, regional national or global groups of people with dementia.

2000: Dementia Advocacy and Support Network International (DASNI) http://www.dasninternational.org
This was the first group ever to be set up by people with dementia, but membership was not exclusive to people wit dementia, and the membership base is 2/3 care partners. Apart from a website, there are no specific services, but it is important to know this group of people, of whom four founding members are still active advocates, and all are members is Dementia Alliance International includes Christine Bryden.

2002: Scottish Dementia Working Group (SDWG) http://www.sdwg.org.uk/videos/home/about-us-sdwg/

2006: Alzheimer’s America Early Onset Dementia Advisory Group (AAEODAG) http://www.alz.org/about_us_early_stage_advisory_group.asp

2012: European Working Group of People With Dementia (EWGPWD) http://www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European-Working-Group-of-People-with-Dementia

2013: Alzheimer’s Australia Dementia Advisory Committee (AADAC) https://www.fightdementia.org.au/about-us/advisory-groups/dementia-advisory-committee

2013: Irish Dementia Working Group (IDWG) http://dementiavoices.org.uk/group/irish-dementia-working-group/

2013: Japan Dementia Working Group (JDWG); unable to find a website for this group; I also learned at ADI Kyoto there are a number of regional Working Groups for people with dementia in Japan

2014: Dementia Alliance International (DAI) – www.infodai.org and www.joindai.org
Established on 1 January 2014 DAI is the only global advocacy and support group, of, by and for people with dementia, and the global voice of people with dementia. DAI now represents > 3500 members in 39 countries, and is a registered charity in the USA; membership is exclusive to people with a medically confirmed diagnosis of dementia.

DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International, also their major sponsor. It provides free membership, free online support groups, cafes and other services, including educational webinars for the whole dementia community.

2014: Southern Dementia Advisory Group (the only working group to have been in a DFC initiative that has been recognised by the WHO, in 2016) http://www.southerndag.org

2014: Ontario Dementia Advisory Group (ODAG) http://www.odag.ca
This was started as a completely autonomous group by a regional group of people with dementia, and was not funded, restricted or informed by Alzheimer’s Canada, although I believe it is soon to become a national group supported by Alzheimer’s Canada.

2015: Highlands Dementia Working Group (HDWG) http://www.sdwg.org.uk/local-groups/inverness-dementia-group/

2016: DEEP Think Tank (not specifically a working group) http://dementiavoices.org.uk/group/dementia-policy-think-tank/

2016: Dementia Awareness Advocacy Team (Brisbane), presence on web via Facebook Group only at this stage

2017: The Three Nations Dementia Working Group (England, Northern Ireland and Wales) launched this this week, supported by the Alzheimer’s Society UK

 

Food and dementia, #DAW2017 Day 2

The importance of good food for a person living with dementia

By Peter Morgan-Jones

We are continuing our series of daily blogs for Dementia Awareness Week UK Day, 2, and are thrilled to have a blog by Executive Chef and Food Ambassador Peter Morgan-Jones, from Australia, who as been working with Australian icon, Maggie Beer on  improving food in residential aged care (nursing homes). Thank you Peter for this wonderful blog.

Good wholesome food is the essential tool for everybody and especially needed for an older person and people living with dementia.

We know that people living with dementia do benefit enormously from good unadulterated food. What is good for the heart is also good for the brain. We also know that ensuring that smaller meals are served and offered more frequent can result in a positive dining experience by a person living with dementia and can also be less overwhelming for the diner.

Good smells from cooking a meal are one of the greatest tools and prompts for stimulating and appetite.

Understanding the needs and preferences of a person’s mealtime experience is a fundamental tool also in ensuring a positive mealtime experience.

Professor Charles Spence is an experimental Psychologist at Oxford University and works very closely in collaboration with Heston Blumenthal on the science of eating and engaging the senses.

With the publication of our two books ‘don’t give me eggs that bounce “and ‘It’s all about the food not the fork” we have touched on the importance of engaging all the senses at mealtimes for a person living with dementia and how they can be great tools in enhancing a positive dining experience of good food.

The senses

Eating is probably one of the few daily activities in which we harness all of our senses at the same time. Smell, taste, sound, touch and sight all contribute to the enjoyment of mealtimes and to engaging a person who is frail or living with dementia in them.

Taste and visual presentation are hugely important, of course, but we should not forget that the way food smells, whether it is eaten in a noisy or calm environment, and the feel of things like cutlery and crockery are well worth considering too.

I have cooked for the royal family and am now the executive chef for one of Australia’s leading care providers.   To be able to use my food knowledge and love of cooking to improve the quality of life of older people has been an amazing opportunity. In my career I have learned that the appreciation of food depends not just on flavour (vital though that is!) but on a great deal besides.

Smell

Our appreciation of flavours actually comes from our sense of smell. The human brain can register 10,000 different odours at any one time and this process starts before we are even born. It is these triggers that are so important, particularly for people with dementia. A long forgotten smell – such as the aroma of a sweet shop or baking bread – could awaken appetite in someone who shows little interest in food.

A fascinating fact about the significance of smell is that several catering establishments using the virtually smell-free cook-chill system to prepare food have started installing “scent clocks” that produce almond aromas at mealtimes to compensate for the lack of smell emanating from the food.

Taste

It ought to go without saying that taste plays a crucial role in the dining experience – but, unfortunately, I feel it needs to be restated. The five taste sensations are sweet, salty, bitter, and sour and “umami,” a Japanese loan word to describe savoury things / a natural MSG flavour enhancer. Sweet taste is a pleasurable sensation, salty taste improves the flavour of food and bitter taste is a primeval protection against poisonous and inedible foods. Sour taste aids digestion and umami taste arises from natural monosodium glutamate (MSG), which is found in the likes of tomato, Parmesan cheese and dried seaweed, to name a few. There is a possible sixth taste which is still being researched: the ability to taste fat.

Getting to know a resident’s preferences and taste palette can help improve their dining experience and increase the enjoyment they get out of their food. We know that tastes can diminish and change with ageing, and even more so with dementia. At thirty years old a person has 245 tastebuds but this falls to about 80 by the time they reach seventy years old.

Sound

Sound often contributes negatively to the dining experience in the form of distracting noises. Ambient noise should be kept to a minimum at mealtimes. The link between sound and food is the subject of an emerging field of research called “neurogastronomy,” which explores the ways in which music and other background sounds can stimulate (or not) the pleasure of eating.

If you need convincing, next time you are on an aeroplane bring some noise cancelling earphones. Start eating your meal with the headphones on and then, midway through the meal, remove them and continue eating. You will find that the noise of the plane affects the “flavour” of the food.

Touch

The feel of the food we eat and the cutlery and crockery we use to eat it influence the way we receive it. For example, if you have a barbeque and serve the meal on a paper plate with a plastic knife and fork, the meal does not taste the same as it would when served on china with a metal knife and fork.

Sight

Visual presentation is a paramount factor in whetting the appetite. When we look at food our eyes take in the colour, gloss, physical form and the mode of presentation, such as the crockery and cutlery. Other sight factors are good lighting and distinguishable plates, like those with borders that “frame” the food and draw the diner’s eye to them.

In fact, sight and smell are the two predominant senses that coax the brain into liking the meal about to be consumed. Presentation has a key role in making it look appetising – “we eat with our eyes”.

Appetite begins in the mind – poorly presented food stops people feeling hungry. How food is plated, or arranged on the plate and garnished, figures deeply in one’s reaction to it. It even affects how we think the food tastes and is key to gourmet cooking.

Painting, balance and colour

A plate of food is like a painting, and the rim of the plate is the frame. This does not mean that you have to spend as much time arranging the plate as Rembrandt did painting a portrait, but it does mean that you need to think a little like an artist and strive for a pleasing arrangement.

Select foods and garnishes that offer variety and contrast, while at the same time avoiding combinations that are awkward or jarring. Two or three colours on a plate are usually more interesting than just one.

Visualise the combination: poached chicken breast with cream sauce, mashed potatoes and steamed cauliflower. Not too good? Or how about roast chicken, chips and sweetcorn? Not quite so bad, but still a little monotonous. Now picture roasted red peppers, grilled stuffed chicken breasts on herbed orzo and a drizzle of green pesto. Visually more appealing!

Many hot foods, especially meats, poultry and fish, have little colour other than shades of brown, gold or white. It helps to select vegetables or accompaniments that add colour interest – one reason why green vegetables are so popular.

Shapes, textures and flavours

Another food presentation tip is to plan for a variety of shapes and forms. For example, you probably do not want to serve Brussels sprouts with meatballs and new potatoes. Green beans and mashed potatoes might be better choices for accompaniments. Cutting vegetables into different shapes gives you great flexibility. Carrots, for example, which can be cut into dice, rounds or sticks (batons, julienne), can be adapted to nearly any plate.

Though not usually included in food presentation tip lists because they are not strictly visual considerations, textures are as important in plating as in menu planning. Good balance involves a variety of textures on the plate. Perhaps the most common error, unless it is a dietary requirement, is serving too many soft or pureed foods such as baked salmon loaf with whipped potatoes and pureed peas. Of course, you cannot see flavours either, but they are one more factor you must consider when balancing the various characteristics of foods on the plate.

Portion sizes and temperature

Match portion sizes and plates. Too small a plate makes for an overcrowded, jumbled, messy appearance, but too large a plate may make the portions look skimpy. And balance the portion sizes of the various items on the plate: one item, generally a meat, poultry, or fish preparation, is usually considered the main item on the plate. It is the centre of attention and is larger than the accompaniments.

Don’t let the main item get lost amid excessive garnish and huge portions of vegetable and starch items. Where there is no main item, as in some vegetable plates, strive for a logical balance of portions.

My final tip would be to serve hot foods hot and cold foods cold! Hot foods should be on hot plates and cold foods on cold plates. Your arrangement of beautiful food will not make much of a final impression if you forget this basic rule.

Bio: Peter Morgan-Jones is executive chef and food ambassador for HammondCare. His culinary highlights include catering for Buckingham Palace garden parties with 8,000 guests, managing 120 chefs on-site for the Wimbledon tennis championships and working in some of the most iconic restaurants in Sydney, Australia. He is the author of two dementia specific cookbooks, don’t give me eggs that bounce and the newly published It’s all about the food not the fork!

 

 

DAI’s Peer to peer support groups, by John Sandblom

We are starting Dementia Awareness Week UK, with a presentation by DAI co-founder, John Sandbom on the value of Peer-to-peer support groups. If you live in the UK, and want to get involved there this week, follow the link in the image here.

As part of the support the DAI offers its members, it has online support groups for members that meet from around the world.
During a presentation made at ADI2016, Eileen Taylor, a current board member and the secretary of DAI said:

“As I said earlier, from a personal perspective, since finding and joining DAI, and being involved as I am, has certainly been a very empowering experience, to belong to such a group. As you can see and hear, I’m talking to you today, and have recently become the DAI secretary, and co-host, of two of the online support groups. So I thank DAI, for having faith in me, and giving me the opportunity to participate in their work.”

Johns presentation: “DAI’s Peer to peer support groups”

You can download his slides here: DAI Peer to Peer Support Groups by John Sandblom_ADI Kyoto_Friday 28 April 2018

Dementia Alliance International (DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Or you can subscribe to our newsletter or weekly blog.

Visit DAI  OR Join DAI

Of, By, and For People with Dementia

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