Category Archives: Dementia

Belated update

Screen Shot 2015-07-28 at 10.18.21 amHello.

This month, as Editor of DAI, it has not been physically possible to keep up with the many commitments I have had in this group, and many others, so I would like to apologise for missing three weekly blogs.

What we can’t do alone, we can do together, but there simply have not been enough helpers to ensure even the basics of our organisation happen this month.

Tribute to Richard Taylor

The passing of Dr Richard Taylor, one of our founding members, and a long time advocate and activist for improving the lived experience of dementia, has also take its toll on our members, and the global dementia community, and to help members, Laura Bowley provided a Zoom chat room on Tuesday; thank you Laura for doing this, it was a good opportunity for people to share their grief.  DAI also continued with Richard’s Thursday support group to allow people to express their feelings and talk about their own memories of Richard.

Keep this date free:

  • August 19 (USA/Ca/UK/EU)
  • August 20 (AU/NZ/Japan/Indonesia)

DAI will be holding a Tribute to Richard Taylor event as part of our A Meeting of The Minds Webinar series.

Details including times will be sent out ASAP.

July 2015 Member update

As far a a July Members update, we were unable to hold the Open Members meeting in July, and I have not written a report to publish here, but suffice to say, there is actually little to report, and so we will provide a two month update at our Open Members meeting in the third Tuesday/Wednesday of August.

Again, our apologies and we hope to see you at the August Open Member to give you an  update, and to hear your views. I’ve not even had time to write up the survey results either, but hope to have that done by this update as well.

Thank you for supporting Dementia Alliance International.

Kind regards,
Kate Swaffer
Chair, Editor, Co-founder

What is dementia friendly?

Screen Shot 2015-07-05 at 4.51.01 pmThe Alzheimer’s Society UK’s Dementia Friends programme is:

“The biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.

Whether you attend a face-to-face Information Session or watch the online video, Dementia Friends is about learning more about dementia and the small ways you can help. From telling friends about the Dementia Friends programme to visiting someone you know living with dementia, every action counts.”

Small actions do count and everyone can make a big difference.

With incredible generosity, their CEO Mr Jeremy Hughes has made this programme available, free of charge, to any Alzheimer’s organisation who wishes to support the dementia friendly work in their country.

It is a wonderful initiative, and it is leading the field, and is making a difference to the lives of people with dementia and their families, friends and supporters.

Being dementia friendly means more than being friendly

From the perspective of people living with a diagnosis of dementia, it is less about being friendly, and so much more than awareness of what dementia is.

It is so much more than professionals and interested others (without dementia) working together to make OUR community more friendly and accessible.

It is more about;

  • Respect
  • Human rights
  • Non discrimination
  • Full inclusion
  • Our right to citizenship
  • Autonomy
  • Equality
  • Equity
  • Access
  • Dementia Enabling Environments
  • Support for disAbilities

Being dementia friendly means including us.

By not including us, the stigma, discrimination, myths of dementia and isolation are continued, and often, by the very organisations and service providers claiming to advocate for us.

Not one or two of us, but a lot of us, and this is why:

  • People without dementia cannot really know what it means to live with dementia; we are the experts of the lived experience
  • People with dementia can inform people without dementia on what it actually means [to us] to be dementia friendly
  • So that is is no longer ‘about us, without us’. This has become a catch phrase, a tick box for organisations, in the same way person centred care is in care plans, but not in action

The dementia friends campaigns being run by advocacy and other organisations need to educate, not just raise awareness.

They need to be respectful and empowering to people with dementia, and very importantly, they need to promote, and use, respectful and empowering language.

If they engage with the media, and ask people with dementia to engage with the media, they must insist on the language being used to be aligned with the most recently updated dementia language guidelines, which can be found here, and without using them, the media, and the organisation, will never be dementia friendly.

Dementia Friends campaigns must never focus on our deficits

If our deficits are what are focussed on, then we will never transform the way the nation thinks, acts and talks about the condition. 

Therefore, Dementia Friends campaigns, campaign material, and campaign media, must never focus on our deficits.

Our disAbilities need to be fully supported, and employing us to work on the dementia friends initiatives is also important. After all, if we were setting up a disAbled friendly community, we would employ people with disAbilities, who really know what it means to be disabled, and what would support them to live in their community independently.

Any organisation, wanting to work on something new, would contract or employ experts.

People with dementia are the experts of the lived experience, and would [and should] significantly and positively impact this work.

In reality, especially in the earlier stages, people with dementia are simply living with disAbilities, that can be supported, in the early stages of the disease. Yes, it is a terminal illness, and yes, it may not be a fun experience all of the time, but it is possible to live much better, for much longer than the expectations and perceptions.

We still have a lot to contribute to society, and our own lives.

As suggested in a recent blog, there are many groups of people working on their own Dementia Friends campaign, excited about what they might be able to achieve, how they might be able to improve the lives of people with dementia and our families, and talking about ways to support us better to live well, and to live in our communities for longer.

Alzheimer’s Disease International have a  Global Charter I Can Live Well with Dementia. Everyone must start including us in this work, it is personal, and not including  us simply means we have less change of ever achieving this goal.

If it’s about us without us, it is not dementia friendly. 

Dementia Alliance International has representation in more than ten countries, which means we can ask members to assist in this work at a global and at some local levels, but we don’t reach all regions.

Therefore, each Alzheimer’s advocacy organisation and Dementia Friends Working Group needs to set up and support their own Dementia Advisory Group, to properly guide, lead and inform the work being done.

What’s missing in the Dementia Friends campaigns?

Some key things  currently missing in the dementia friendly communities work and campaigns are;

  1. Each country, each city, each community working on becoming dementia friendly, must set up their local/regional/city/country Dementia Working/Advisory Group. This is because every single community is different, and because the work must be led by people with dementia, not as it is now, which is by people without dementia.
  2. To be dementia friendly themselves, advocacy organisations must start employing or contracting people with dementia, or an organisation like DAI, to work on their dementia friends campaigns. People with dementia should be treated with the same respect any other consultant is, and paid for the expertise.
  3. They must also themselves, be audited on whether they are operating within their [which should be our] dementia friendly guidelines, and being audited by people with dementia is the first place to start.

Join the global Dementia Friends movement

We ask that everyone join the global Dementia Friends movement, start your own local, regional, city or country Dementia Friends campaign, and support people with dementia, but please, always fully include us in this work.

Each country, each community, needs it’s own Dementia Advisory/Working Group of people with dementia, to lead, guide, and properly inform this work.

And finally, it should not be a marketing tool for organisations to promote themselves, which is what person centred care very quickly became.

Copyright: Dementia Alliance International 2015

Dementia Beyond Disease: Enhancing Well-Being

Last week DAI members and others were privileged to have Dr Allan Power present a session, Dementia Beyond Disease: Enhancing Well-Being as part of our A Meeting of the Minds Webinar series. Thank you Al, your effort, and deep commitment to improving the lives of people with dementia is appreciated.

Dr Allen Power is an internist, geriatrician, and clinical associate professor of medicine at the University of Rochester, New York, and is an international educator on transformational models of elder care, particularly for those with changing cognitive abilities. Dr. Power is the author of two books, Dementia Beyond Drugs, and the newly released Dementia Beyond Disease. He has served as an advisor and educator for the US government for their antipsychotic reduction initiative. Dr. Power is also a board member and educator for The Eden Alternative, the world’s largest culture change movement for elder care.

You will find his presentation enlightening, and hopefully, if you work in dementia care, culture changing.

Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world that seeks to represent, support, and educate others living with the disease, and an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

See the recording of his session here. Apologies it has not been edited to improve the quality.

Dementia Beyond Disease: Enhancing Well-Being

https://www.youtube.com/watch?v=42DvFgXEPKk

We will post his power point slides here as soon as possible but due to my current poor internet connection, they won’t download here!

For those who want to follow Dr Power’s schedule, see his website here http://www.alpower.net/gallenpower_schedule.htm

Membership of Dementia Alliance International is free, and is exclusive to those with a medically confirmed diagnosis of a dementia. Join us at http://www.joindai.org

If you do not have a diagnosis of dementia, but are interested in our work, you can subscribe to our weekly blog or visit us at www.infodai.org

As an unfunded advocacy and support group for people with dementia, we appreciate all donations, and are thrilled to have received one following this last webinar. Thank you.

Research and news: June 2015

Slide6This weekly blog is late, due to time constraints caused by travels of the editor, and various other issues taking precedence which I will write about very soon. Please accept our (my) apologies.

However, there are a couple of interesting research reports I felt would be of interest to members this week, and a recently released ADI newsletter, the first one that DAI has a full page in as a regular feature.

Global Perspective Newsletter June 2015

Firstly, the Alzheimer’s Disease International Global Perspective Newsletter is out, with the first full page insert of news by Dementia Alliance International.

You can download the full newsletter here:  ADI Global Perspective Newsletter June 2015. DAI is featured on page 7.

Younger Onset Alzheimer’s disease

Reported on 28 May 2015 by Dr Ian McDonald in Dementia News, currently the Science Communicator at Alzheimer’s Australia, is another interesting research report: Younger Onset Alzheimer’s disease – new research reiterates it is not just about memory loss.

It is common to associate a diagnosis of Alzheimer’s disease with memory loss and while this is the case for many, new research has suggested that younger people (i.e. less than 65) with a diagnosis of Alzheimer’s disease will more commonly have problems associated with judgement, language and/or visual and spatial awareness, rather than memory loss.

This result was published in the Journal Alzheimer’s and Dementia and suggests a need for a greater awareness of the different symptoms associated with Alzheimer’s disease. This is something that Alzheimer’s Australia and other dementia advocacy groups around the world are committed to doing.

The study, which was undertaken in the UK and led by researchers from the University College London, analysed data from 7815 people in the US National Alzheimer Coordinating Centre database. Each participant had a diagnosis of Alzheimer’s disease, and a record had been made of the symptoms they had first noticed in the early stages of the disease. The average age of the group was 75, with the youngest person aged 36 and the oldest aged 110.

The results found that younger people with a diagnosis of Alzheimer’s disease more commonly displayed non-memory cognitive impairments (i.e. judgement, language, etc.), however the results also showed that the odds of depression and behavioural symptoms also increased with younger age. In comparison the odds of having psychosis (confused thinking) but no behavioural symptoms increased with older age.

Source: Alzheimer’s Australia Dementia News

ADI Report: Women and Dementia

ADI have also published an important report, Women and Dementia, with the purpose of this report is to understand the main issues affecting women in relation to dementia from an international perspective. The report examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal caregiving role for someone with dementia.

Key findings

Across all regions of the world, dementia disproportionately affects women.

More women live with dementia than men. The prevalence is higher for women than for men; women are more at risk of developing dementia and the symptoms they live with are more severe.

Women provide a substantial proportion of informal care to people with dementia, with around two thirds of primary caregivers overall being women.

This figure is significantly higher in LMICs, areas which will account for 71% of the global prevalence of dementia by 2050.

The formal care workforce is predominantly female, providing the majority of health and social care in the community as well as in hospitals and care homes.

There is currently very little research focusing on the gender issues of living with, or caring for, someone with dementia and on the long-term impact of dementia on women as family and formal caregivers.

 

The report recommends that:

All countries need to understand the current and predicted prevalence and acknowledge that dementia disproportionately affects women. Accordingly, policy makers should review what support is currently available and what is required to meet future needs.

There is also a need for skilled care competencies for health and care staff and professionals working with people living with dementia with complex needs and co-morbidities.

In all regions people should be able to access appropriate information and support in place, enabling women across the world to continue to provide care, and to feel cared for themselves.

Source: Alzheimer’s Disease International

Read the full ADI report Women and Dementia-Full report or the summary Women-and-Dementia-Summary-Sheet

Open members Meeting Notes: June 2015

Screen Shot 2015-10-28 at 6.54.05 amDuring the week, we held our first Open Members Meeting, with about ten members present. Due to some IT challenges, it was a difficult meeting for us all to hear each other, and I kept being cut off, so as the host, it was less than perfect!

Although this open members meeting it is a change from the system we first started in 2014 where we had open Board meetings, I truly believe it will give our members a better chance of having your say, and will impact more positively on the way you want DAI to exist. The method of being part of the Board meeting, with no real voice, and no voting rights, for many, did not allow you to have a voice at all, because, as with all groups, there are those with stronger voices who sometimes speak at the cost of others. That is never intentional, and may also happen in this forum, but we are really hoping we can give you a stronger voice. If it does not work out to be a better system, we will review it with you, as we will always work towards improving our methods and services.

We welcomed everyone and thanked them for making the time to join us. I cannot easily express how important it is and how much it means personally to me that members made the effort to attend this meeting, because after all, we are only existing because of our desire to support and advocate for people with dementia.

DAI needs your voice.

I had wanted to start with power point slides but the iPad I was limited to using did not support this, or, I did not know how to work that on an iPad!!!

We went over the meeting guidelines and protocols,  and did not record the meeting, so I hope we can manage to report it here now! If I fail in this, we may need to record it next time. To those of you present, please let me know.

The main guidelines or protocol for the meeting is that we do not interrupt someone when they are speaking, and we ask members to please indicate when they wish to speak, rather than talk over someone else. Nothing complicated at all.

As there had been some significant news since the Board meeting was I held, I began the meeting with a newsflash.

Newsflash

Since the last Board meeting, we have had two people resign from the Board. Janet Ford (nee Pitts) resigned for personal reasons, and Sid Yidowitch resigned mainly due to changes in his health.

Representing the DAI membership and Board, I would like to thank them both for their incredible passion and commitment to the group, especially Jan as a co-founder who has also been a co-chair for almost 18 months, and who represented us so well in Geneva in May. They have both worked hard and represented people with dementia well, advocating strongly for us all.

Updates from Board meetings:

May Board meeting

It was decided in May that in line with our DAI vision and mission, and with what it clearly states on our website and all documentation, that membership of DAI must be exclusive to people with a medically confirmed diagnosis of dementia, and we can not accept members without this, therefore MCI is not sufficient to be a member. This has meant we have lost at least one member, whom we will always welcome back if a diagnosis of dementia is ever confirmed. However, the rationale is that, we do not want DAI to be taken over by people without dementia as happened with DASNI. And for example, as MCI does not always lead onto a dementia, it is not appropriate therefore, to break the membership criteria.

Getting a medically confirmed diagnosis is incredibly difficult for almost everyone, and we realise there needs to be a support group set up to support this group, but it is not currently the mandate of DAI; we barely have funds to operate for members who have a confirmed dementia.

June Board Meeting

In June we held the first closed Board meeting, and we reported the following to members, directly from the minutes from that meeting;

1. ADI has agreed to make a donation to DAI of £1000, based partly on some donations made at the conference in Perth, and partly because I did not claim my speakers travel bursary allowance. This will ensure our running costs are covered for the year, allowing us to continue to fund the Zoom meetings, support groups and other events.

2. We had been asked to provide a work plan for the next fiscal year to ADI, and after much discussion agreed to start with the following:

Three publications:
• Consumer Empowerment
• Communicating with PWD
• I’ve just been diagnosed: What next?

We still need to determine conference attendances, but we believe ADI2017 and WHO meetings on dementia are a ‘must attend’ for as many members as we can find funding for.

3. Jan had reported on the WHO assembly she attended saying it was an excellent conference. One if the highlights meeting the Ambassador of the UN on human rights, and hearing about their focus on lower and middle class countries; language barriers discussed; Jan discussed DAI, past current and present. Speech went over well, very receptive re rehabilitation and individualised person centred plan to keep people in the community; in the same way as has happened in the disability sector.

4. I gave an update on members survey – it was decided 10 questions should be the limit, as more than that may be too difficult for us to complete, and also more than 10 would mean we had to pay a service fee. A few members trialled the draft survey I initially set up, and found it reasonably easy to do. Kate and John sent it to our members. Whilst the survey was not perfect, in part due to being limited to a FREE one, we have received feedback for a significant number of members, and after another 2-3 weeks, I will evaluate and report on it. It will be open a little longer, if you still wish to send in your thoughts.

5. DAI is a member of Global Alzheimer’s and Dementia Action Alliance, although there was nothing to update as we still do not have the minutes from the first face to face meeting held in Geneva in March. We are also a member of LEAD, although again there was little report.

Finally, we spoke about the Dementia Friends Canada campaign video 

Many who have seen this believe it has taken our advocacy efforts back 30 years, and that potentially it increases stigma, discrimination and FEAR. It stereotypes us indicating ALL people have the same symptoms, and focuses ONLY ON OUR DEFICITS.

If you haven’t seen it, and wish to send your feedback or comment in any way, here is the link.

In no way does it line up with ADI’s global charter of living well with dementia.

Some feedback we received said: “it should be a video to explain what the Dementia Friends initiative is and how one becomes a Dementia Friend and perhaps some examples of how someone in the community who is living with dementia might be assisted, not a video that, if I didn’t already know so many people with dementia, I’d be more afraid of someone with dementia than ever!!! The fact that all one has to do to become a “friend” is watch that dumb video is appalling.”

Many of us agree with these comments. The Board has also agreed to send a formal letter to Alzheimer’s Canada.

Please note: Since the open members meeting, I have had a conversation with their CEO who has explained their rationale for it.  That is not to say we will support it, but we do need to thoughtfully and properly respond. I did suggest our members could be a resource for Alzheimer’s Canada i the future, and hope we are taken up on this offer.

Members open discussion

After I was cut off from the meeting, Susan Grant hosted it it was a good discussion where everyone introduced themselves more personally, talking about how long diagnosed and of what their passion was in campaigning and how this could assist DAI.  Members present talked more about why they joined DAI and how they would like to contribute. Everyone was keen to share e mails and face book accounts.

The meeting finished around 22:40pm, and everyone appeared happy energised and ready to assist the DAI BOARD in any way they could.
Thank you for attending, and please, if you were not able to make this one, bring yourselves and your voice to the July Open Members meeting.
Kate Swaffer, Editor and Co-chair
Copyright: Dementia Alliance International 2015

 

John Sandblom presents as ADI2015

Slide01Co-founder and current Treasurer of Dementia Alliance International, and past co-chair (2014), John Sandblom presented on behalf of our membership at ADI2015 in Perth recently.

The presentation presented by John Sandblom titled Finding Our Voice was accepted for oral presentation was written by John, and co-chairs Janet Pitts and Kate Swaffer,  was well received, and very timely. John has given us permission to add the slides and notes from his speech, although unfortunately, no-one managed to record it, so we cannot upload a video of it. Thanks John, you did an excellent professional job or representing our members and organisation.

Abstract:

This presentation will review the first year of a global advocacy and support group, of, by and for people with dementia called Dementia Alliance International. Our vision, “A world where a person with dementia continues to be fully valued” is being realised, as more people with dementia connect around the world, and speak up for their basic human rights. We speak up for full inclusion and a place at the international dementia table; as people with dementia we believe that without full inclusion at the conversations about the very things that affect our lives and futures is imperative. The stigma, discrimination, prejudice, myths of dementia and isolation are simply being exacerbated, by the organisatons or researchers purporting to improve our lives or advocate for us, without us. We will discuss the technology being used to support our work, allowing us to progress rapidly as an organisation with no funding, and with representation from a number of countries. We will also review the Master Classes run during Dementia Awareness Month 2014, and the value of the sharing of the lived experience of dementia. Finally, we will discuss how collaboration has been the key to our success, as well as allowing us to support the work of other people with dementia in individual countries such as the Scottish, European, Australian, Irish and Japanese Dementia Working Groups, rather than work against each other or in isolation. In its first year, DAI has become the peak advocacy body, supported by ADI, of by and for people with dementia.

Presentation slides and notes:

Slides: Finding Our Voice_John Sandblom_ADI2015

Notes: John’s personal introduction including diagnosis and current position with Dementia Alliance International and including his role as a founding member.

Please note: The content of this presentation and our website represents our opinions (however well-informed they may or may not be) and should NOT to be considered medical advice, it is not medical advice. Medical advice should only be obtained during conversations with your own medical doctor.

DAI started as a dream by many people with dementia, all of the founding members having varying versions of that dream, but it was driven by the desire for change, and the desire to increase awareness, education and most importantly, connecting with others people living with dementia all over the world. It is about people with dementia finding their voice, and being fully included.

Our vision is “A world where a person with dementia continue to be fully valued.”

Through empowering members to work on projects, speak out, and get involved in support groups, we believe the value of improving the quality of life for people with dementia is tremendous, and often life altering. Even when people are no longer employed, they can still be meaningfully involved and contribute to society.

People with dementia have an indescribable instant bond, perhaps because we are at great ease with one another, but mostly because you know the other person knows what it is to live with dementia, not questions necessary. Many people doing advocacy work on their own have now joined to work together with other DAI members.

What we can’t do alone, we can do together.

Through strong advocacy, we have collaborated with ADI, and are now the peak body globally representing people with dementia. Whilst we are an advocacy and support group, of, by and for people with dementia, with no ongoing funding, and some voluntary administration and other support, we still need to work towards finding regular funding, and finding volunteers willing to support our work.

All organisations require funding and manpower support, and Dementia Alliance International is no different.

We speak up for full inclusion and a place at every international dementia table… Nothing about is without us.

In finding our voices, we are continuing with the mission of DASNI and The Scottish Dementia Working Group, whose mantra was NOTHING ABOUT US WITHOUT US: Full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination and isolation.

Like everyone else, we make mistakes and we may not be able to function at the same level as people without dementia, however that is no reason to no include us. We need to be allowed to fail, just like everyone else.

By not including us, the stigma, discrimination, prejudice, myths of dementia and isolation are being exacerbated by the organisations, researchers and service providers purporting to improve our lives or advocate for us.

NOTHING ABOUT US WITHOUT US will ultimately mean full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination, isolation and other negative experiences of dementia.

What we do:

  • Website, weekly blog, newsletters
  • Weekly online support groups
  • Advocacy and speaking roles
  • Master Classes
  • Monthly Webinars: A Meeting of the Minds

Supported by technology:

  • Zoom platform for online
    • Board meetings
    • Events
    • Educational webinars
    • Master Classes
    • Weekly support groups

Collaboration is the key to our continuing success.

DAI is a global voice

  • We advocated for a person with dementia to become a member of the World Dementia Council
  • A member was invited to present at the World Health Organisations first Ministerial Conference on Dementia in March

Living better with dementia… It is possible.

But the attitudes of, and support from researchers and health care professionals need to change on this.

The language of dementia also needs to change to language we find empowering, enabling and respectful. Please see Alzheimer’s Australia updated language guidelines – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

“People will forget what you said; people will forget what you did… But people will never forget how you made them feel.” (Mayo Angelou)

“People will forget what you said; people will forget what you did…
But people will never forget how you made them feel.” (Margaret Meade)

 

Membership of DAI

  • Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN icon on our website
  • Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK icons

www.infodai.org/membership/

@DementiaAllianc

www.facebook.com/DementiaAllianceInternational

[email protected]

You can all sign up to receive our weekly blogs when they are published by clicking on the BLUE button on the left had side of the website.

Thank you.

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.

Kate Swaffer presents at ADI2015

Dementia Awareness Week UK Day 3

For Day 3 of Dementia Awareness Week UK, we are previewing Kate Swaffer’s recent keynote presentation, Dementia Friendly Communities? at ADI2015 in Perth. She talks about what dementia friendly means to people with dementia, highlighting some of the missing pieces of the puzzle in the Dementia Friendly Communities work being done around the world. Thanks Kate, and thanks also to Dr Shibley Rahman for recording it, and giving us permission to share it.

Whilst there are no speech notes to add here, the power point slides are available here ADI2015_DementiaFriendlyCommunities_Swaffer_Keynote_FINALbut the key messages are listed below.

  1. Treat us as equal partners
  2. Include us in every conversation about us; nothing about us without us
  3. People with dementia must be at the centre of the work being done towards dementia friendly communities, in the same way people with disAbilities would be included
  4. Being dementia friendly is not so much about being ‘friendly’, but about full inclusion, respect and accessibility to our community

Dr Al Power presents at ADI2015

Dementia Awareness Week UK Day 2

In his recent ADI2015 key note presentation in Perth, Implementing Person Centered Care, Dr Allan Power speaks passionately about culture change in dementia and aged care. Allen is an internist, geriatrician, and clinical associate professor of medicine at the University of Rochester, New York, and is an international educator on transformational models of elder care, particularly for those with changing cognitive abilities. He is the author of two books, Dementia Beyond Drugs, and the newly released Dementia Beyond Disease. He has served as an advisor and educator for the US government for their antipsychotic reduction initiative. Dr. Power is also a board member and educator for The Eden Alternative, the world’s largest culture change movement for elder care. Thanks go to Dr Power for allowing us to present it here, and also to to Dr Rahman for recording it and giving permission for us to share it here.

Dementia Awareness Week UK Day 1

Slide5Research wrap #5: Reviews from ADI2015

By Dr Ian McDonald, Alzheimer’s Australia Science Communicator

Thank you Ian.

This week, we are publishing a blog each day as part of  Dementia Awareness Week in the UK, and with permission, I am commencing the series with three blogs written by Dr Ian McDonald, the Science Communicator at Alzheimer’s Australia, who usually write a monthly Research Wrap up for us. This will save him some work this month!

Scotland has a DAW scheduled in June, so we may find the energy to publish a blog e very day of that week too… please, if you have any articles you would like to write and have shared here, send them in.

I know these are a little delayed as it is almost a month since ADI2015 in Perth, but they are an interesting wrap of the conference. I have included an excerpt from each blog, but please do follow the links to the full articles. The next few days we will also be featuring more of the presentations by members, and others from ADI2015 in Perth, as they are uploaded to our YouTube Channel.

April 16 – Highlights from ADI2015: Developments Risk Reduction Diagnosis and treatment

Opening of ADI2015 Image source: Kate Swaffer
Opening of ADI2015
Image source: Kate Swaffer

Dr Richard Walley gave the official welcome to country on behalf of the Nyoongar people and said to attendees in his traditional language. Follow the link for the full blog.

I want to give presenters an ability to articulate messages in a clear manner and those who receive the message ability to pass it on and share,” said Dr Walley who also passed on a message stick to the conference which was accepted by two attendees.

April 17 – Highlights from ADI2015: Local and International Action against Dementia

Marc Wortman, the Executive Director of Alzheimer’s Disease International spoke about their current strategic plans now and into the future, telling attendees. Follow the link above for the full blog.

“Dementia is a societal problem and we need to provide care today while we look for the cure tomorrow,” Marc Wortman.

April 18 – Highlights from ADI2015: Engaging, Supporting and Including people living with dementia

The last day of the conference saw sessions focusing on new research into Younger Onset Dementia (YOD) as well as engaging people living with dementia and improving their quality of life. Today’s presentations had a focus on how society can best support and include people with dementia in everyday life.

Once again the discussion was led by those who are living with, caring for and/or working with those with dementia. Follow the link above for the full blog.

Editor: Kate Swaffer
Copyright 2015 Dementia Alliance International