Category Archives: Dementia Alliance International

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‚Äôs disease ‚Äď 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:
‚ÄĘ Consumer Empowerment
‚ÄĘ Communicating with PWD
‚ÄĘ I‚Äôve just been diagnosed: What next?

We still need to determine conference attendances, but we believe ADI2017 and WHO meetings on dementia are a ‚Äėmust attend‚Äô 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 ‚Äď 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‚Äôt already know so many people with dementia, I‚Äôd be more afraid of someone with dementia than ever!!! The fact that all one has to do to become a ‚Äúfriend‚ÄĚ 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, ‚ÄúA world where a person with dementia continues to be fully valued‚ÄĚ 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¬†‚ÄúA world where a person with dementia continue to be fully valued.‚ÄĚ

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‚Ķ But people will never forget how you made them feel.” (Mayo Angelou)

“People will forget what you said; people will forget what you did‚Ķ
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.

‚ÄúI 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,‚ÄĚ 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.

‚ÄúDementia 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

Edie and Anne speak at ADI2015

Edie Mayhew and her partner Anne Tudor from Ballarat, Victoria in Australia gave a poignant presentation titled: Our Bitter-Sweet Journey with Younger Onset Dementia . It is an enlightening discussion on the highs and lows of living with dementia, and of their triumph as a couple on living the best life possible with Mr Dementia present in their home. Thank you both for allowing us to share it with DAI members here, and also to Dr Rahman for recording it and giving permission for us to share it here.

They have also kindly provided their speaker notes for us to publish.

OUR BITTER-SWEET JOURNEY WITH YOUNGER ONSET DEMENTIA

INTRODUCTION: 

Hi I’m Edie, and this is my partner, Anne. I was diagnosed with Younger Onset Dementia, Alzheimer’s Disease in September, 2010, aged 59. I worked happily as a teacher of the deaf for twenty years, teaching unhappily in a regular Primary School for two years, then for 5 years as a Massage Therapist. But after two hip replacements I found my true calling as a Driving Instructor loving, every minute of the twelve years I was able to do it. Being forced to retire was my greatest disappointment when diagnosed with Alzheimer’s. It also put an end to being a blood donor. I almost made it to 100! I don’t remember much about pre-diagnosis other than I kept going to the wrong house to pick up clients for their driving lessons. Anne will tell you about that period.

Pre-diagnosis: 

In 2005, one of Edie’s hip replacements dislocated and she was given pain relief before and after arriving at hospital. For three hours, Edie continually asked, ‚ÄúWhere am I?‚ÄĚ and ‚ÄúWhat am I doing here?‚ÄĚ. It was the first time I’d seen her mind fail her and it frightened the hell out of me. My mother died from Alzheimer’s a few months later. I became a research subject in an Alzheimer’s study early in 2006, because of my mother’s alzheimer’s and almost imperceptible signs of change in Edie.

A pattern was emerging with Edie withdrawing to the study and spending hours at her computer. In time I came to realise she was playing computer games. She would no longer sit and relax with me and would only watch sports programs on TV. Edie was also reluctant to socialise, later revealing she couldn’t follow group conversations and didn’t want to repeat herself. If I tried to discuss these changes she would get defensive or angry. If I came into the study she’d shut down the computer. We had never had these issues before.

Edie wasn’t able to express what was going on in her head; she was cut off from herself as well as me. She was increasingly disengaging, becoming more forgetful, easily frustrated, lethargic, defensive and obstreperous at night.

We’d make arrangements to meet for lunch but she wouldn’t turn up and I wasn’t getting messages about arrangements which had been made to catch up with friends. But the clincher that something was seriously amiss concerned a pizza delivery. Some Friday nights Edie ordered us a large capriocossa. One night, one small capriocossa arrived for both of us for dinner. ‚ÄúWhy on earth would you order a small capriocossa?‚ÄĚ I asked bewildered. ‚ÄúI’m not very hungry‚ÄĚ was Edie’s response. My world collapsed in that moment. I knew I had lost my Edie.

I was increasingly having to remember events and organise everything, including holidays. We went on safari to the Kruger National Park in 2007 and to Norway, Vienna, Prague & Croatia in 2008. Unlike all previous travel, Edie had no interest in being involved in any of the planning, although I knew she was very keen to travel. Twice at airports when we were separated Edie became very distressed. She stopped contacting friends and initiating outings. She was leaving for work earlier and earlier.

When we were putting this presentation together I mentioned to Edie that it was bringing back a lot of painful memories and she said ‚ÄúI didn’t handle it very well‚ÄĚ. She didn’t, she shut me out and wouldn’t share her concerns. But I didn’t handle it very well either, I wasn’t as patient as I wished I’d been, nor was I persistent enough in getting Edie to talk. We both withdrew as a way of managing the situation. It was a horrible time.

The Road to Diagnosis:   

Anne says I was prone to falls and had several from 2007 onwards, badly injuring my shoulder a couple of times and grazing my shin very badly when I tried to stop my car from rolling down the driveway! One day I came back from a walk and told Anne I thought I’d fallen over and dislocated my finger. Next time we saw the doctor she confirmed the finger had been dislocated & I must have fixed it myself.

In mid 2008 we were travelling from Split to Dubrovnik by boat. We decided to top & tail it on the bottom bunk and put our bags on the top bunk. At some stage in the night, I climbed up and went to sleep. I must have needed to go to the toilet & forgot I’d shifted beds. This resulted in me falling with a great thud, hitting my head against the half opened metal bathroom door as I landed, and leaving me with two black eyes & a very sore head. Passengers looked at us suspiciously at breakfast next morning, which amused us greatly.

In December 2008 I had a knee replacement. While in hospital our bank rang and told Anne we were two months behind in credit card payments. We’d never had to pay interest before. When Anne checked my desk she found a mountain of unattended bills and business forms that had been there for months. I was summarily sacked as the Chancellor of the Exchequer.

In April, 2009 we travelled to the Sunshine Coast with Anne’s sister & her husband and I tripped on a shrub, fell over and shattered my patella. Fortunately the knee replacement I’d had four months earlier wasn’t damaged. The kneecap was wired and we went on our planned holiday to North Queensland. I was in a full leg brace & totally dependent for six weeks.

Anne persisted in trying to get me to see our GP. It took two years. When I came home she asked me what the doctor said and I told her she said there was nothing wrong. I think I must have forgotten why I went to see her. When we both went a couple of weeks later, our GP conducted the three object test and declared ‚ÄúEdie, your memory is shot‚ÄĚ. I then had a neuropsychological assessment over six hours from May, 2009. Results indicated problems with new learning and memory, and mild attention and organisational difficulties. He suggested a review in twelve months.

I was referred to a geriatrician while still wearing the full leg brace. The geriatrician concluded I was depressed, which I was, and dismissed the neuropsychological report. An MRI scan indicated no abnormalities and we were told to get on with our lives and forget about memory problems!

Some months later I had a review with my Sleep Apnoea Specialist. Anne talked to him about her concerns and his response was that it was a bit like looking into the distance on the road: you see an oncoming vehicle but it’s too far away to know what type of vehicle it is; when it gets closer you can determine if it’s a bus, or a truck or a car. We knew this to be bad advice and that early detection and diagnosis was very important.

Anne had already decided prior to the neuropsychological review that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ¬Ĺ years in an environment which worked really well for everyone.

Diagnosis 

We had the 12 month review mid 2010. The neuropsychologist kindly wanted to give us the feedback at home. Significant deterioration had occurred in the 12 months, particularly in new learning and memory. He indicated the likelihood of Alzheimer’s.

We sat silently in the lounge room for a long time after he left, feeling appreciative for the calm, caring way we were informed, but numb. Eventually we stood up and held each other for a long time, and cried. The elephant in the room was the experience with my mother who had Alzheimer’s for more than 20 years. We had moved from Melbourne 23 years earlier to assist my father in her care. We had been to this place before.

Edie obviously found the thought of me having to face this dreaded disease again unbearable and undoubtedly it was a significant factor in her shutting down for so long. However having a partner and a parent with dementia is a very different experience.

We sourced a specialist neuropsychiatrist in Younger Onset Dementia in Melbourne for a formal diagnosis. He has been a great support. Alzheimer’s was confirmed in September, 2010 after a PET scan and a review of the earlier MRI. We knew now what we were dealing with and there was relief in that. It was more than five years since I first became concerned about changes in Edie.

 The First Two Years Post Diagnosis: 

Having to retire was a terrible blow. We had to sell my car and try to sell the business. There was a succession of new people passing through our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. Anne felt overwhelmed at times with the amount of form filling she had to do ‚Äď Centrelink to claim Disability Pension, Carer’s Pension, Carer’s Card, Companion Card, Taxi Directorate, ACAS forms, and a 30+ page application form for Respite in an Aged Care facility. Thankfully Younger Onset Key Workers assist newly diagnosed families through the process now. We are fortunate to have an excellent Key Worker in Ballarat.

Becoming actively involved in the world of dementia was a positive first step. A group of local people with Younger Onset Dementia and their partners participated in the three day Alzheimer’s Australia ‚ÄúLiving with Memory Loss‚ÄĚ program. It was confronting and informative, powerfully bonding our group and helping to establish a small community of care and support. We now knew Alzheimer’s Australia would be with us for the long haul. I joined Alzheimer’s Australia Victoria Reference Group and Alzheimer’s Australia National Advisory Committee.

Those with the diagnoses went on to participate in a planned day activity group at Eyres House, initially one day then two days a week. We were a close knit group, had use of a bus and engaged in many fun, activities. The program is currently going through a transitional phase as two members died late last year and dementia has progressed significantly for others; they have either been admitted to an aged care facility or are no longer able to participate in the YOD program. It has been difficult as I am the only original member left. The dedicated staff are committed to YOD and we’re hoping that YOD members with advancing dementia will still be able to maintain some connection. Two new members have joined.

As part of planned activities at Eyres House in 2011, a specialist YOD art group was established at a Neighbourhood House, run by the Salvo’s, one half day a week. Using different mediums we’ve created a number of pieces, individually and in groups. We’ve also produced personal photo booklets. I had no experience with Art before this and it has been a great activity, building confidence, enabling creative expression and giving an opportunity to produce something meaningful. Some of our work has been placed in the YOD Garden at Eyres House.

After I had my third hip revision in December, 2011 I went to a private hospital nearby for a week’s rehabilitation. Although the hospital was aware of my dementia, and a profile Anne prepared had been placed at the front of my medical file, I was still discharged without any consultation with her.

During the first two years post diagnosis we had regular appointments with the neuropsychiatrist and a specialist Younger Onset Dementia Social Worker. In addition to support from Eyres House, we had a Local Council respite worker for 3 hours a fortnight and respite support from a community service provider who came four hours a week. Anne received support from Carer’s Victoria and she attended monthly Alzheimer’s Australia supported Carer’s Group Meetings, formed after the Living With Memory Loss Program. I know Anne values the group highly. From the beginning we established six weekly appointments with our GP, then monthly appointments with a physiotherapist and weekly sessions of hydrotherapy. I also see a podiatrist every six weeks.

We completed major renovations to our home two years after diagnosis. It was worth the stress and inconvenience as it has made our lives easier with a new kitchen and bathroom, flooring, carpets and a lighter coloured interior. The pull out pantry and large drawers are great. We have a beautiful garden and a gorgeous 14 year old dog called Shinji. We both love our home and where we live and plan on staying there for as long as possible.

We discovered over time that my bad humour was related to feelings of vulnerability, grief and fear of the unknown. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We had to face the grief, and terrible sense of loss that comes before acceptance. The necessary internal shifts brought with them a serenity and even deeper love. We gradually became more relaxed, contented and good humoured.

There’s no short-cut to fully accepting such a changed life circumstance, and we didn’t handle things as well in the first couple of years as we do now. But with good communication, tinkering with medication, and the support of significant others, we gradually learned to accept then embrace our new reality and the subtle changes as they happen.

A Taste of An Anne Day: written in 2011/12 ANNE

I can’t find Edie’s purse and phone; we’ve attached them with a small chain so they can’t get separated when lost. I spend countless time looking for misplaced or lost items. Rings and keys constantly go missing as well. I’ve replaced at least 25 house keys as well as multiple credit cards and mobile phones. Sometimes I look for an hour without success, then later that day or the next I notice Edie with the missing object. She doesn’t remember it being lost so can’t tell me when it’s found.

Edie locked me out when I went to hang out the washing. I’ve been locked out many times when I’ve been working in the garden. She forgets where I am. On the other hand the front and back doors don’t get locked when she leaves the house.

I was packing for an overnight stay. Edie put some toiletries in the bag and I took them out. I said I’d already packed toiletries. Later I found she had put them back in again. On a good day you laugh, on a bad day you don’t.

Today I have a deep, aching, searing, loneliness for the lost Edie. The logical, practical mind that remembered everything, always. She knew what to do, how to do it and she always did it well. Edie was my rock.

We’re in bed and playing with our iPads. I turn to Edie to tell her I’m ready for sleep. She gets out of bed and puts on the main light to organise her CPAP machine. I ask her to turn on her bedside light instead of the main light, just as she always does, she gets angry and goes to the second bedroom. In the early days Edie would get into a bad mood and stomp into the other bedroom to sleep without me knowing why. The next morning she’d forget she’d been upset and tell me she moved beds because she was tossing and turning and didn’t want to disturb my sleep.

I woke up with a nasty headache. I call Edie 8 times before she gets up. We have to leave for an appointment in 15 minutes. She’s still in her PJ’s and playing games on the iPad. I jig her along in a good natured way. It works. Getting frustrated and impatient doesn’t.

‚ÄúWhat day is it today?‚ÄĚ Edie asks for the fifth time and it’s not midday.

I can’t open the freezer because Edie put a loaf of bread in the icebox and it’s stuck and I just found the ice cream in the cupboard. It takes so much time to do or undo or redo things each day. Edie has accidentally broken a treasured crystal glass I’d given to my mother 45 years ago and a short time later she broke a favourite tea cup. I’m more detached from material items, there’s no point in prolonging discomfort for no benefit to either of us.

I can’t find the utensils I need to cook tea. I put them in particular places in drawers and cupboards and they disappear. Sometimes never to be seen again. I know I put the small sharp knife in the top drawer, but it’s not there. In fact it’s not in any drawer and this is a replacement for the previous one which went missing in the same way.

We had a lovely day, and dinner. We were sitting together watching TV. I’m privately reminiscing ‚ÄúThis is just like old times‚ÄĚ. Edie’s mood becomes sombre. I ask her what’s wrong. ‚ÄúI didn’t like what you just said to me‚ÄĚ she responded. I hadn’t said a word, just feeling a quiet contentment. I realised later that a very unpleasant memory returned of me being angry and expressing my frustration. Before diagnosis, I’d get exasperated and say, ‚ÄúJesus, Edie‚ÄĚ. Historical emotional memories would emerge as if it had just happened. Edie quietly disappears and goes to bed. Dementia can be an assault on both of us.

Before and for two years after diagnosis, there were many times I’d feel threadbare. I rarely if ever feel that way now. Personal growth comes with time and experience, and from facing your own humanness and limitations each and every day. Caring humbles and softens, and smoothes out the rough edges. It gets easier.

A Taste of An Edie Day:   

We have put together a series of slides with captions which will give you some sense of a typical Saturday for me at home.

The Last Two & A Half Years: 

Some Concerns about Respite and Residential Care:

I’d first like to make a couple of comments about respite and residential care.

Appropriate planned respite is very difficult to get, and virtually impossible in a crisis. For a few years we were able to arrange planned respite in a local Aged Care facility, one that Edie enjoyed. The respite was organised 12 months in advance, for 1-2 weeks every 3 months and the arrangement benefitted both of us. Unfortunately this facility has discontinued respite. We think we’ve found a good alternative aged care facility but it will only offer respite this year. Good respite is a necessary part of our plan to stay together for as long as possible.

We would like any facility Edie is involved with to be a homely environment, one that recognises we have spent most of our adult lives together, is respectful of our relationship, offers an appropriate quality of care with an informed approach to YOD, is person centred and provides a stimulating environment.

It was towards the end of 2012 that calm descended on our household and remains so. An addition to Edie’s medication regime to counter anxiety issues at night may be part of the explanation. The decision for me to retire was definitely a factor. Although I had not taken on new work and had gradually reduced my hours for the three previous years, our lives are much simpler since I actually retired in June last year. We had worked our way to a good place.

We feel comfortable with other’s who know, understand and accept Younger Onset Dementia; those who are in the same position as ourselves, special family members and friends who have stayed closely connected as well as the respectful professionals who assist us along the way. We need and appreciate this help, support and encouragement. We need to know someone will be with us when they’re most needed.

We still check in with our neuropsychiatrist from time to time as well and have occasional visits to the Social Worker. We have a Consumer Directed Package which we use for gardening help. Julie who worked with Edie for fours hours a week for 3 years, retired last November and gave her a farewell poem called ‚ÄúPrecious time with Edie‚ÄĚ; it is working out well with the new worker, Maree. Edie is still involved with the YOD programme at Eyres House two days a week. We continue our regular medical, physio and hydrotherapy appointments. I also do Yoga and have monthly massages. We are fortunate to have extensive resources, support and commitment to Younger Onset Dementia in Ballarat.

Some Brief LGBTI Comments:

Many people in the LGBTI community have had discriminatory experiences throughout their lives; others try hard to blend in so as not to experience rejection and discrimination. We count ourselves¬† fortunate having not just avoided obvious inequities since Edie’s diagnosis but felt genuine respectfulness and acceptance from those who cross our paths. I did wonder at the time though whether hospital staff at the rehabilitation hospital who discharged Edie without any consultation with me would have been more consultative and patient care centred if one of us was male. In many same sex relationships, especially those without children, partner’s and close friends can take on an even greater significance to the person with dementia. In some circumstances, family are unable to accommodate the lifestyle of their LGBTI relative and try to override the wishes of the partner or the person with dementia. For some a suspiciousness of medical and community care resources exist because of earlier bad experience. We participated in a study conducted by Dr Catherine Barrett and colleagues at La Trobe University. The project is a collaboration with Alzheimer‚Äôs Australia. The purpose of the study was to document LGBTI people‚Äôs experiences of dementia and their needs to inform the education of service providers. We understand there are few studies internationally that have sought the perspectives of LGBTI people themselves ‚Äď and until this occurs it difficult to understand how services could be consumer focused. The results will be published later this year and would be well worth examining.

In Summary: Triumph, acceptance and love

Dementia is disabling, challenging and life changing, but there is more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I’ve lost. I have this moment in time and that’s enough. Dementia has also strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn’t have had.

The last two and a half years have seen each of us grow to a place of acceptance, contentment and peace. It’s not devoid of frustration and stress but those feelings pass quickly because that’s not what we want our lives to be. We choose to be on the side of life.

We are grateful for what we have and it helps us deal with our reality. I have never loved Anne more, nor have I ever felt as loved by her. I know she is here for me and I know that makes me feel safe. We do feel blessed. We’d like to finish our presentation by sharing something of our 31 years together.

 

Authors: Edie Mayhew and Anne Tudor Copyright 2015

Editor: Kate Swaffer

 

 

 

 

 

 

 

 

 

 

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer‚Äôs, but with emphasis that I may “have it” but it certainly doesn‚Äôt have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word‚Ķ “dementia” but most don‚Äôt understand what it means!¬†

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my¬†wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means.¬†

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Helga Rohra speaks at ADI2015

This week we are posting the speech given by one of our Board members, Helga Rohra, who is also Chair of the European Dementia Working Group. She was an invited keynote speaker on Day 2, asked to present on her life diagnosed with dementia. Helga’s¬†presentation was poignant, funny, honest and very professional, and she was¬†a shining star at the conference. When I have time. I’ll try and transcribe her¬†speech to add as notes. Thank you for sharing your life with us all Helga.

It is important to note, that in Helga’s introduction, it was incorrectly stated she is the Chair of the first Dementia Working Group to have been set up in the world. Helga is Chair of the European Working Group, operating since 2012, but¬†in fact, the very first working group, The Scottish Dementia Working Group, ¬†was set up in 2002. ¬†DASNI was set up two years before that, but has not remained exclusive to people with dementia, so there are¬†six¬†Dementia Working Groups around the world, where membership is exclusive to people with dementia, as is Dementia Alliance International.

Editor: Kate Swaffer