Tag Archives: #DAW2017

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!