Category Archives: #DAM2016

Extending CBR to older persons: A global imperative

screen-shot-2016-09-03-at-3-54-36-pmWelcome to October, and hopefully a rest after a huge month of raising awareness and members activities! However we need to kick of this month with a video presentation by Prof. Peter Mittler for the 2nd World CBR Congress conference in Kuala Lumpur last week. We produced a flyer for this event as well, which went into more than 1500 conference bags, downloadable here: extending-cbr-to-older-persons-a-global-imperative-dai-prof-mittler-september-2016. Thank you Peter for all you do for all people with dementia.

CBR VIDEO NOTES (not the full transcript)

Personal message to viewer

YOU CAN MAKE A DIFFERENCE TO THE QUALITY OF LIFE OF PEOPLE WITH DEMENTIA

You can ALL be dementia friends, supporters, champions

IMAGINE a series of concentric circles.

In the middle of the smallest circle is YOU or a PERSON LIVING WITH DEMENTIA.

The next circles include-

– your family

– your neighbourhood

` friends and acquaintances

– where you work and in your organisation

-the OUTER circles are about climate change, inequalities and the UN

– and its international treaties on the human rights of everyone on the planet Including the UN Convention on the Rights of Persons with Disabilities to which 166 countries are now committed in international law.

I’m here because Dem receives worst care in the developed world -even worse in Global South

MY BACKGROUND

I’m Human Rights Adviser to Dementia Alliance International – the voice OF people with dementia.

ID, WHO CBR, HR, CRPD,- CBR from the start; now more relevant than ever-2030

Diagnosis- DAI –Aim live well with dementia;

claim HR-CRPD

CBR approach is ideal for dementia

CBR can support people who may have dem- carry out simple checks, recommend asst

PWD EXPERIENCES AND PRIORITIES

Diagnosis: (v rare in Global South). –Spread the message here; we need to get it into KL Declaration.

QUINN

The UN Disability Convention is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the myth system of our own values and the operations system of how these values are dishonoured in daily practice.

As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change.

 

 

World Alzheimer’s Month 2016 wrap up

IMG_4978We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the  brilliant local, regional, national or worldwide advocacy some members are involved in.

Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.

There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.

That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5  years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.

People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.

And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.

We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.

So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.

Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia.  Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.

There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!

Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year.  You can view Chris’s documentary here…

Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.

Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.

It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!

Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.

You can read more about Susan’s documentary here…

In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.

It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!

DAI: A growing global movement

Screen Shot 2015-09-21 at 8.09.05 amAs the work of DAI becomes increasingly global, and with members in more than 38 countries now, it is imperative we do more than have a ‘Translate’ button on our website, which is in reality, is not very accurate in many of the languages.

Without major sponsorship, of course, doing this is costly and mostly unaffordable, but we have many friends and supporters of our work and people with dementia in their own countries who are very generously willing to support our work, and today, we are highlighting two of them.

So, it is important we acknowledge that DAI is an “Advocacy and Support group, of by and for people with dementia”, with “the support of a lot of friends, which include our families and care partners, as well as a growing number of academics and other colleagues committed to improving the lives of people with dementia and our families”.

see-the-person-italian

Eloisa Stella from Italy is an applied anthropologist, a mental health advocate, and the co-founder and vice-president of Novilunio (novilunio.net), and we thank her for her support of DAI and all people with dementia in her country especially.

This organisation is an Italian non-profit organization dedicated to promoting quality of life services and social inclusion of individuals with cognitive decline.   She has very generously translated our Human Rights publication, and has been highlighting our work on her own website and publications, by translating some of our blogs. Thank you Eliosa.

The Italian translation can be downloaded here The Human Rights of people with dementia: from Rhetoric to Reality and read the blog about DAI (if you read Italian!!) here…

It you read Italian, you can also see some of our members stories and our work translated on her organisational website. Ken Clasper from Durham in the UK features in this article.

The second DAI friend we wish to highlight today and express our sincere thanks to for her support is Lyn Chenoweth.

Lyn is Professor of Nursing the  Centre for Healthy Brain Ageing at the University of New South Wales. Lyn has generously funded the Arabic translation of our Human Rights publication, which you can download here The Human Rights of people living with dementia-from Rhetoric to Reality_arabic.

We also have been provided with a Spanish translation of the Human Rights document worked on by a number of DAI supporters currently being formatted, and will write a blog focused on one of our DAI members who presented in Mexico on World Alzheimer’s Day last week (via video) and our Spanish translation of this document and her presentation next week.

It is incredible that we are becoming truly global in this way, as we work to support members who do not speak English.  We also have someone generously working on a translation in Portuguese, and hopefully soon, Japanese as well.

DAI is also working on videos for a number of non-English speaking countries to support both the advocacy organisations and their members, with subtitles in a number of different translations. Again, as ewe mostly rely on pro bono support, it takes time, but, importantly, it is in progress.

Introducing the Ontario Dementia Advisory Group

screen-shot-2016-09-28-at-9-54-38-amAt DAI, we work whenever possible to support not only the global advocacy work of our members and if possible, all people with dementia, but if we can support individuals or groups nationally or locally as well, we do our utmost to do so.

We are proud to work with the Ontario Dementia Advisory Group and support them with their work as they feel the need, whether it is a zoom meeting, a webinar or a chat on Facebook. We don’t directly impact their work, or persuade their strategic direction, or their local or national goals and ambitions in any way (unless of course we are asked to), but what we can do, is support them in other ways. For example, the global work DAI has done on human rights and the CRPD, was able to positively support them with their own senate submission earlier this year.

What we can’t do alone, we can do together, either side by side with our sleeves rolled up together, or supporting each other from afar.

The creation of the Ontario Dementia Advisory Group

By Mary Beth Wighton on behalf of the ODAG

“Just a mere 2 years ago, the idea of people with dementia being central to their care was not readily considered. In Ontario, there was not even one group made up solely of people with dementia who self-governed. In fact, this was the case for all of Canada.

It was at this time, the Ontario Dementia Advisory Group (ODAG), was created. Five people living with dementia came together knowing that it was time for us to to stand up and raise our voices. I’m proud to say we have been very successful.

ODAG is unique in the fact that it is made up of people with dementia – and not care partners. We have created a structure that puts people with dementia in the center and partners around us. Our strong relationships with a variety of types of organizations has helped in enabling us to accomplish our goal of influencing policies, practices and people.

In fact, we have been so successful that we are the only group in North America like this. Internationally, we are recognized as being one of only 6 other organizations who collaborate and work together with governments of all levels, Alzheimer Associations, Research and a multitude of other types of organizations.

ODAG GROWTH

ODAG is at a very important stage in its growth. Currently, we only have a membership of eight people. This is obviously too few for the work that needs to be done. Recognizing this, we have begun the process of developing a Recruitment Strategy plan that will bring in 500 new members over the next year 15 months. Yes, 500 members!

You may be asking yourself, what will we do with all of those members. Why do we need them? What’s the goal? It is simple:

  • We need more PWD voices to fight for our citizenship rights as declared in the United Nations treaty
  • We need to challenge stigma that encourages people to speak for us and represent us. We can speak for ourselves and contribute in meaningful ways.
  • 500 PWD will allow for us to apply political pressure to fight for our needs – in particular transportation and resources allowing us to live at home for as long as possible. In fact, the Ontario Dementia Strategy Discussion document has just been released. ODAG intends to help PWD understand the plan and provide feedback to the project team.
  • And it will provide ODAG with the ability to forge new and strong relationships. Canadian Senate
  • ODAG garnered international attention when it spoke as Witness for the Canadian Standing Senate Committee on Social Affairs, Science and Technology for its study of dementia in Canadian society.

In a historical moment for the rights of people living with dementia, ODAG used the United Nations Convention on the Rights of Persons with Disabilities(UN CRPD), Accessibility Article, to obtain a number of accommodations from the government. It is the first time in Canada people with dementia advocated for ourselves in such a manner. The results were electrifying!

ODAG’s most recent achievemet involves our membership of a new Task Force named the “Canadian Dementia Working Group” which is a consortium of non-governmental disability organizations in Canada. It submitted a Memorandum to the UN CRPD as it relates to “Concluding Observations” report from the UN to Canada.

The ODAG members and all of our Partners have done a fantastic job on pushing for the rights of PWD. Continued success is on the horizon!”

Please do watch this remarkable video made about some women in Canada, living strong with dementia.

“I have had the privilege and honour to meet the women in this video, in person or online, and love them and their work” (Kate Swaffer, Chair, CEO and co-founder of DAI).

Occupational therapists and dementia

meredith-gardner-otOur blog today published in our continuing daily series for World Alzheimer’s Month 2016 #WAM2016 #DAM2016 has been generously written by Meredith Gardner, who is an occupational therapist working within the Gold Coast Hospitals & Health Service.

Meredith has a special interest in working with people with dementia and cognitive impairments, and enabling people to engage in everyday life and valued activities. Thank you Meredith, we truly appreciate your generous effort to write this article in support of our growing community.

The value of an occupational therapist for people with dementia

By Meredith Gardner

Doing as much as I can: How can we support people with dementia to be independent and engage in meaningful activity?

Participating in normal activities of daily living contributes hugely to quality of life – choosing an outfit, playing with the dog, talking to a friend on the phone, going out for coffee, watering the garden, cooking your partner a meal. These are the things we take for granted until we can’t do them anymore.

We all feel better when we feel like we’re contributing, doing something positive or productive. When we are a part of something bigger than ourselves.

Research shows us that it’s so important to keep using our brains and body in new ways as we get older, to keep neurons firing and muscles activated. Our brains are very crafty, and when brain damage causes difficulty using our brains in our usual way, often our brains create new pathways to get the job done.

Being engaged in activities that we want to do or need to do can provide a sense of identity, competence, joy, comfort, self-expression and improve mood. An occupational therapist assesses a person’s strengths and limitations to enable independence and participation. This is an occupational therapists’ approach to supporting people to do as much as they can.

  1. Know the person

Find out what’s important to the person with dementia by asking about previous and current life roles, values and liked/disliked activities. Look for activities that validate the person’s sense of identity.

By identifying strengths you can capitalise on those. Strengths could include physical fitness, a social nature, willingness to help or habitual skills.

Sensory impairments, such as hearing loss, visual impairment or difficulty processing sensory information encountered in everyday life can compound problems faced by people with dementia and are a normal part of the ageing process.

  1. Be goal directed

Dementia can lead to multiple problems in everyday life. What’s important to the person and their loved ones? Focus on one or two goals rather than trying to address everything at once. Goals are likely to change over the course of time.

Here’s an example of what a goal might look like. I will take consistently take the correct medication dosages using a pre-packed medication dosette box and an alarm within two weeks.

Make a plan for the future before crisis point. Consider driving, finances, medication, health directives and enduring power of attorney.

  1. Grade the task

Most people can participate in everyday life in some way, despite significant cognitive impairments.

There is a huge spectrum between being independent and not being able to do a task at all. We can grade the difficulty of the task from simple to complex. You may need to use a trial and error approach to find out how much the person can do for themselves. Often the person just needs the time and opportunity to do the task.

To enable independence, do with the person instead of for the person.

This can be the hard for the support person. We want to help. We want to help so much we end up doing things for people.

Examples of how tasks can be graded for different abilities.

Simple Complex
Clapping along to music Playing the piano
Being present while food is cooking, smelling aromas, looking at and touching ingredients Monitoring food cooking on the stove

Setting the table

Sorting socks into pairs Operating the washing machine
Hitting a balloon Playing tennis

Types of assistance you could provide:

  • Verbal instructions at the start of the task
  • Step by step instructions as you go
  • Demonstrations
  • Visual cues (objects, pictures, signs)
  • Backward chaining (you start the task and the person with dementia completes it)
  • Forward chaining (the person does the first steps and you complete the task)
  • Hand over hand (put your hand over their hand to show the movement)

When grading or modifying a task, it may be to reduce or eliminate a risk. For example, many people with dementia cease driving due to the possibility of a car accident. When considering the risk it’s important to consider the hazard, the potential outcome and the likeliness of that outcome. Some activities like driving will carry much greater risks than others such as not showering everyday day or using a sharp knife. What’s a finger cut in comparison to a life of occupational deprivation?

  1. Modify the environment

Visual or auditory reminders can help support a cognitive impairment – labels, task checklists, signs, calendars and alarms. I’m already using my smartphone as my back up brain with records of upcoming appointments, contact numbers, shopping lists, tasks which need to be done with specific phone apps designed for this purpose. Other specific technology examples include: a GPS watch (pinpoints location and aid navigation), a medication alarm clock (delivers tablets at dosage time) and a personal alarm (one touch button to family or emergency response).

screen-shot-2016-09-25-at-3-09-39-pm

Given sensory impairments are common in people with dementia, colour contrasting objects can help support low vision. Visual landmarks help people navigate. Remove trip hazards, like small changes in surface height, loose mats or cords.

For people with a lowered stress tolerance or at certain times of day it can be necessary to reduce stimulation to help relaxation and brain recovery following activity. This is as simple as: turning TV/radio off, turning off lights/drawing curtains, sitting in a chair/resting in bed and NOT TALKING! I would also recommend reducing distractions if you need to focus on a more difficult task.

  1. Habits and routines

Although dementia often affects short-term memory, other memory types can be used. “Procedural memory” is a type of long-term memory, which helps us to do familiar tasks. For example, knowing how to bring a fork to mouth to eat, or how to shave. These motor skills are often unconscious.

When tasks become habit, they become automatic and require less cognition. A regular daily routine can help provide structure, so the person knows what to expect at what time of day. This can reduce the stress of an unstructured day by providing direction for “what’s next”. A visual reminder of the daily routine can be helpful. Try to base the daily routine on the person’s usual routine, for example, if the person is in the habit of showering before bed; make sure this is part of the routine.

Make sure your time frames are realistic – give the person as much time as needed. Being rushed and stressed doesn’t help anyone’s thinking skills. Schedule both physical activity and down time into the down time to maximise function. Routine should be a balance of stimulating (morning) and relaxing (afternoon/night time) activities.

Keep important objects (keys, glasses) in their usual places!

  1. Trial and error

Problem solving skills are vital in being able to cope with changes in thinking skills and function. When addressing a problem, there are usually a number of solutions. Persistence is key. Be creative! And please share any creative ideas you have with me: [email protected] Modify your goals if needed.

I just can’t stress enough the importance of doing things to keep your body and brain going! Visiting new places, trying new skills (painting, singing), volunteering, tai chi or yoga.

How to access an occupational therapist:

  • People with chronic health conditions can access five free occupational therapy sessions through their GP: http://www.health.gov.au/internet/main/publishing.nsf/Content/health-medicare-allied-health-brochure.htm
  • Ask your GP for a referral to adult community health in your area
  • People over 65 years can self-refer for an occupational therapy home visit through the Australian governments My Aged Care website: http://www.myagedcare.gov.au or call 1800 200 422.
  • Access a private occupational therapists in your area: https://www.otaus.com.au/find-an-occupational-therapist

Helpful resources:

  • Independent Living Centre website – almost every bit of equipment you could ever want or need! http://ilcaustralia.org.au
  • Tele Cross – free daily telephone call and welfare check from Red Cross http://www.redcross.org.au/telecross.aspx
  • At Home With Dementia (NSW Dept ADHC) https://www.adhc.nsw.gov.au/__data/assets/file/0011/228746/at_home_with_dementia_web.pdf
  • Free council activities (Gold Coast website) http://www.goldcoast.qld.gov.au/community/active-healthy-program-27969.html
  • Dementia: Osborne Park Hospital Guidelines for OT in Clinical Practice (WA – DTSC) – specific strategies for certain problems that could arise from day to day http://ilc.com.au/resources/2/0000/0415/dementia_osborne_park_hospital_guide.pdf
  • Relate, Motivate, Appreciate: An Introduction to Montessori Activities (Alzheimer’s Australia) https://www.fightdementia.org.au/sites/default/files/AlzheimersAustralia_A5_Montessori_Booklet_WEB(3).pdf
  • Allens Cognitive Levels + Caregiver Guides

 

World Rocks Against Dementia #WRAD 2016/17

 

norrmsIn our continuing series for World Alzheimer’s Month 2016, today for a #RememberMe story, we are highlighting the work of one of our  members Norrms McNamara from Torbay in the UK.

Thanks Norrms for generously sharing writing this story for us to share here, and for the work you do. We can and will change the world, one small action or step at a time, each in our own unique ways, and by collectively working together and supporting each others efforts.

This is Norrms story on his World Rocks Against Dementia campaign…

“Hello my name is Norrms Mc Namara and eight years ago aged just 50 I was diagnosed with dementia. I have since gone on to create the Global Purple Angel Dementia campaign which is now established in over 45 + countries approx. and has over 550 Global purple Angel dementia ambassadors, please feel free to join us.

Did you know? Something very special happened on March 17th of this year?? It will also be happening on March 18th next year 2017 as well and this is where we need your help please.

This year, on March 17th, was  the very first WRAD “World Rocks against Dementia “and for the first time in history 14 + countries around the world came together through the power of music to STAND UP and stand TOGERTHER in the face of this disease.

The idea to Rock against Dementia was not my idea but came from a great friend of mine Wayne Mesker in the USA, all I did was to ask him if we could make his idea a worldwide event and put the word WORLD in front of it which he thankfully agreed to. Then with his connections and mine we worked together to make this happen; this year and it was a HUGE Success.

A huge amount of work lay ahead in front of all of us and with the help of some very good friends we got it off the ground, little did we know then how big it would become. Before we knew is we were being contacted by organisations around the world and also small towns, villages and cities across the globe. The beauty of this is, it’s not about “Rock music “Per say”  but about ANY TYPE of music from Classical to Rock, and from Country and western to Blues/R+B and it doesn’t matter one IOTA if it’s a huge hall lasting all day or a few people getting together around a CD player in your own front room, the point is we ALL COME TOGETHER on this day to remember all those touched by this disease. All we ask you to do is Contact us on Facebook…

For WRAD 2017 the incredibly hard working Kirsty Anne Johnstone is taking the lead and with our support we are hoping this will be even bigger and better hopefully doubling the amount of places involved; we also have the FULL backing from Marc Wortman and Alzheimer’s disease International so please please join us in 2017 by making this the BIGGEST DEMENTIA Awareness raising event the world has ever seen.

The next WRAD is March 18th, 2017

Below is a list of all counties etc involved in this year’s event and also a gallery of some wonderful pictures from around the globe.

Best wishes, Norrms Mc Namara

WRAD 2016:

  • Alzheimers Greece, Thessalonike.
  • Alzheimers Turkey
  • Nigeria – Kikelomo
  • India (Sailesh Mishrea – Silver Innings)
  • Wales: Pendine Park, Wrexham, N. Wales (Chris, Anita and Ann Farr)
  • Ireland – Heather Gray-Gately
  • Scotland, Aberdeen, (John Law)
  • Senior Living L’Amore, Beijing CHINA(Robert Arsenault)
  • Purple Cities Alliance, Knoxville. USA (Kathy Broggy)
  • Huntersville, N. Carolina USA (Huntersville CAREs)
  • Torbay, Devon, UK (Norrm of course)
  • Crewe UK (Ian Hatton)
  • Cheshire UK
  • Loughborough UK (Ruth Coward)
  • Burnham LeCrouch, UK, Alex Babb
  • Essex UK (Dengle D-Caf)
  • Manchester, UK (Alessandra)
  • Bedfordshire UK (Lorraine Womack)
  • York, UK (Helen Moyniham)
  • Manchester UK (Bridie Breen)Irish World Heritage Centre
  • Shepperton, Middx, UK (Jean Saunders)
  • Scarborough UK
  • Rotherham, Barnsley or Doncaster (not sure exactly where!)UK (Graham Wilmot)
  • South Africa (Hayley Maisch – Elzabe Ballan)
  • Gold Coast, Queensland, AUSTRALIA (Patricia Mitchell)
  • Queensland, AUSTRALIA (Debbie Moffat)
  • Nepal (Ajay Chhetri Alz Nepal)
  • Canada
  • New Zealand

15 countries confirmed, 29 cities”

Life is fragile

Thanks to DAI member Maria Turner-Hauer for highlighting this quote on Facebook today… it is a timely reminder to us all, and a worthwhile post for our daily blog series for World Alzheimer’s Month 2016 #WAM2016 #DAM2016

Live every day as if it’s your last, just in case it it.

Be grateful for what you have today, tell those you love that you love them (often), and be kinder than necessary as we usually never know what someone else is battling with.

quote-for-blog

Human rights are not an abstract concept, by Owen Miller

blogs_guest_owenmiller_140x140px-wpcf_128x128With permission, we are publishing this blog written by by Owen Miller. It was initially published as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, and can be viewed here.

Thank you Own, for permission to publish it in full here for our members and supporters, and thank you Alzheimer’s Scotland who have lead the human rights base approach to dementia, which DAI, with the support of our Human Rights Advisor Professor Peter Mittler is now working so hard towards making a reality globally.

Human rights are not an abstract concept

By Own Miller, first published on September 1, 2016

“Taking the #rightapproach empowers people with dementia and their carers.

Human rights are inalienable to each and every person. They cannot be given to us. But they can be obstructed or restricted by a number of factors, some unintentional.

Every day we exercise our human rights in a number of ways, so much so that we take them for granted. Our communication, our choices and our actions are human rights playing out in practice. They are fundamental to who we are as individuals and allow us to play active roles in the societies in which we live, take part in activities we enjoy and go about our lives in a meaningful way.

But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level.

The PANEL (Participation, Accountability, Non-Discrimination, Empowerment and Legality) principles provide a strong framework for ensuring that a rights-based approach is taken in in practice. This can be applied in a range of contexts and settings, from the way an individual is treated as the result of stigma up to the highest level of decision making on health and social care services.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level. A fundamental part of this involves making sure that the views and experiences of people with dementia, their families and carers, underpin our own internal policy development; for example, our 8 Pillars Model of Community Support and Advanced Dementia Practice Model.

Externally, the Scottish Dementia Working Group and the National Dementia Carers Action Network are well established national groups which have led the way in showing how involvement can work. Both groups meet with Scottish Ministers and civil servants to discuss issues which matter to them and have been involved in the development and implementation of Scotland’s dementia strategies. They have also informed national training programmes such as the Promoting Excellence Framework and worked with academic institutions to share their experiences with nursing and Allied Health Professional students to raise awareness of future generations of practitioners.

More recently, local groups have come together to shape their communities. They have been engaging decision makers within Integrated Joint Boards, helping local businesses and organisations to become more Dementia friendly, and working with local schools to raise awareness of dementia amongst younger people.

People with dementia and their carers have time and again shown us their commitment to working and supporting policy, strategy and their communities, in order to ensure that their experiences drives improvements.

There is a common perception that human rights are abstract concepts which exist only in the domain of legal professionals and policy makers, with no bearing on real life. This is demonstrably untrue – we need everyone across the statutory, third and independent sectors to support involvement and engagement in a meaningful way. When given the opportunity, people with dementia and their carers are more than able and willing to exercise their human rights in affirming and meaningful way.”

Important: Opinions expressed by bloggers are their own and don’t represent those of the Scottish Council for Voluntary Organisations.

Dementia and religion

ken-clasperDAI member and friend Ken Clasper has been writing a blog for many years on his experiences of living with Lewy Body Dementia. A recent one on how dementia may affect a persons religious or spiritual life was very interesting, and we thought it worth sharing here.

Thank you as always Ken, for your terrific insights, and willingness to share them with the whole world.  #WAM2016 #DAM2016

Memory Problems and Religion

By Ken Clasper, first published on 9 September 2016.

“The other day I was having a conversation with an elderly clergyman.

We were discussing various things, and then I said that I no longer attend churches because the services are all so very different.
He questioned what I meant by this, not pushing his views, but he was interested in my reasons for giving up my religion.
I say giving up my religion!
But I am still a Christian, even though I never attend a church service these days, and as far as that is concerned, I like many thousands of others are still very religious even if we no longer go inside a church.
It’s a long story I said, but it started around 12 years ago when I realised that my memory was going.
Until this time I has always been very religious, and as a boy in the church choir, I would attend three services perhaps each Sunday.
As an engineer I would go to church, but I would carry a pager for emergencies, and would leave the service if it went off.
How ever 12 years ago I started to forget how to do my job, something which shocked me, and I got very distressed because I did not understand what was happening.
All of my electrical training was disappearing, and it felt as if a virus had wiped my memory completely.
I was then very ill with Pnuemonia and my memory took a hammering again.
One day I went to church and realised that I no longer remembered the Lords Prayer.
I was totally devastated at this, and try as I might, I just could not remember the words.
When you forget the things like this, that you learnt as a child it can be very upsetting, and even worse when coupled with forgetting his to do your job.
After trying for a few months, going over and over the words, I started to get to grips with it, and I felt really proud of myself.
However the next time my wife and I went to church I realised that the words of the Lords Prayer were totally different?
But I said I will push myself to go in the hope of getting the words right.
But then I heard that the church used a different version of this Lords prayer at every service, and to make things even worse, there were occasions when they would sing it.
I had learnt to sing and follow music as a child, but now I find it difficult to read the words while following the music.
As a boy chorister I remember singing Handles Messiah in Durham Catherdral. This was done by our own church choir, the Cathdreal choristers and another choir.
I vaguely remember this, but now I am unable to sing properly, and unable to read music.
In a vane attempt to sort things out, because memory lose, is something that thousands struggle with, I spoke to the local priest, but he just shrugged his shoulders and said that he could do nothing about it.
I then said, what about all of the elderly congregation with memory problems, people who attend every week, and pay your salary.
But I got no answer. So obviously the elderly and those with memory problems are nothing to do with the church.
To add insult to injury,  I was once accused of staying with the past and not keeping up with modern times.
But we were taught the original  forms of service and prayers as children, yet here it was being thrown out with the bath water so to speak.
….
Had it not have been for my daughter telling me about voice activated computer software, I would not be using a computer to keep myself active these days. “

Go to his blog to read the full post…

 

Note: Ken’s blog was forwarded to a chaplain friend of DAI’s in Australia as we felt it would be of interest to him. He felt it might be helpful to send us this his response, which I have shared below.

“This makes interesting reading to me.
It is a bit of a re-mind-er of some of the battles I have had on the same theme. I always used the ‘old’ familiar version of the Lord’s Prayer and other common worship liturgy when doing services in Aged Care – and especially with people with dementia in so-called ‘memory support units’. I found that the poetic resonance as well as the known words helped, or seemed to help, people connect into a more meaningful experience of worship. (I now have some questions about worship per se.)
I think that the writer touches on something important.
This is the desire to connect with the emotional, affective and experiential aspects of his (former) faith practice. While there is clearly frustration at not being able to remember things from his past religious practice, the essential component of that experience is perhaps still valued and known to him. It is unfortunate that so much emphasis is placed on getting the words right and in the right order when it really is all about a sense of being able to ‘rest in’ the comfort and care of what those words are attempting to express.
When the actual words are lost to us, the meaning that they impart at a deeper, more spiritual level may remain. Yes, people with dementia forget or do not have the format available to them anymore but the vehicle to the deep things is in the pathos, rhythm and mood of the language. It may not be enough to say that remembering precisely no longer matters, but it has always been the case that the experience has been the transforming thing. How often are we moved by worshipful music and choir renditions in languages we do not know. It makes me wonder if in fact the writer may find something in deliberately joining in or listening to worship that is in a language that has always been totally unfamiliar – Fijian choir harmony or old Latin?
The other side of all this is the way nearly all Judeo-Christian story has revolved around memory. I think the church did a good job once by re-telling it’s story in familiar liturgy and readings but with all the ‘smoke and bells’ and ‘theatre’ accompanying it. That way it was a total sensory experience. With the constant trend towards using only relevant more modern language the nuances of the craft of worship forms has been lost – or weakened.
It is time that the churches recognized the limits of didactical approaches with their dependence on perfect memory (even quasi-legal) and re-discovered the value of sensitive emotional and experiential forms. (Worship forms should be designed around the people not the leaders.)
The writer may be helped by an approach that looks at this as just another change in his life. We go through many changes – cognitively, socially, emotionally and mostly get through them with a little help from our friends and family. I am guessing, but even though changes in the past may no longer be a clear memory, there is a lingering awareness that we have lived through many changes.
This has all been a bit long-winded, so the nutshell version is: go for the feeling, it has always been what has given the ‘facts’ their relevance and vitality.”

Alzheimer’s Has, at least two faces by Brian Le Blanc

screen-shot-2016-09-22-at-8-16-45-amAs World Alzheimer’s Month 2016 #WAM2016 or Dementia Awareness Month 2016 #DAM2016 as many would prefer it was called progresses, we continue our #RememberMe stories of members and others living with dementia.

A few moths ago, a very active advocate in the USA and also a DAI member (amongst many other things), Brian Le Blanc, also known as The ALZ Guy @TheBrianLeBlanc on Twitter,  gave us permission to share some of his writings about living with dementia, and today, we are sharing his insightful piece of how dementia looks to others when we are in a public space, and how that might be totally different to what our closest family such as a care partner might see. Thank you Brian.

You can read an excerpt from his blog here…

Alzheimer’s Has, at least two faces

“In 1996, Barbra Streisand  directed and starred in the movie, “The Mirror Has Two Faces.”  Streisand plays a homely-looking, Columbia University English Professor with low self esteem issues, who, through a personal ad placed by her sister, meets Jeff Bridges , a Columbia University leading figure in the Math Dept. They agree to marry based upon what they describe as a “palsy-walsy pseudo-marriage.” They see each other, as well as themselves, being not who they really are but seeing themselves only on the surface.

At this point, you may be asking yourself, “What does Alzheimer’s have to do with a Barbra Streisand movie? Well, other than the title of the movie, it has to do with the perception of how we see ourselves and how others see us.  This brought to mind what I wanted to write about. Confused? Great! Welcome to my world.

Maybe this will help:

More than several months ago, at least I think it was, Shannon (my beautiful, understanding, loving wife) and I were returning home after a presentation I gave to a local Rotary Club. I always ask her how things went for I know she will be honest with me. This time, instead of giving me an answer, she started to cry. (I must tell you that due to the fact that Alzheimer’s has already begun its destruction of my short-term memory, I don’t remember many things, however, I do remember this.)

I asked her what was wrong and this is what she told me.

“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I  terribly miss.
They, your audience, don’t see who you are when you are away from the spotlight.
They don’t see the confusion, the anger, the anxiousness.
They don’t see the man who can’t remember how to do the simplest of chores.
They don’t see the man who has a reminder on his phone to eat and to take a bath.
They don’t see the man who can’t remember something he was told 5-10 minutes ago.
They don’t see the man who, without a prepared speech or notes can’t speak without stuttering or going blank.
So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”

I was speechless. To be honest, I had no answer. I just sat there feeling sad. I knew she wasn’t mad at me, that she was mad at the situation. I feel sad right now writing the words as I recall that event, not sad for myself, but for her. You see, she thought she was getting someone she would get to spend the rest of her life with travelling, laughing, living out all the dreams we shared.

Now she sees only glimpses of that man . . . glimpses of me or who I used to be.”

Go to Brian’s blog to read the full story here…

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