Category Archives: Dementia

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

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.

https://youtu.be/lOOHddSP1Xg

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, “Where am I?” and “What am I doing here?”. 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. “Why on earth would you order a small capriocossa?” I asked bewildered. “I’m not very hungry” 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 “I didn’t handle it very well”. 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 “Edie, your memory is shot”. 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 ½ 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 – 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 “Living with Memory Loss” 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.

“What day is it today?” 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 “This is just like old times”. Edie’s mood becomes sombre. I ask her what’s wrong. “I didn’t like what you just said to me” 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, “Jesus, Edie”. 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 “Precious time with Edie”; 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’s Australia. The purpose of the study was to document LGBTI people’s 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 – 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’s, but with emphasis that I may “have it” but it certainly doesn’t 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… “dementia” but most don’t 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

Cafe Le Brain Australia and our online Support groups

Screen Shot 2015-05-15 at 8.17.48 amCafe Le Brain Australia is re-commencing on the third Friday of May which is May 15th, being run again on a monthly basis from 1pm (Brisbane, Queensland time).

All DAI members will be sent the link to join as soon as it is back up on our Events calendar. For May, we will have a guest speaker, yet to be confirmed, but who will present on a topic of interest to people with dementia and their friends and family, and who will be available for questions.

Please keep May 15th free to join Cafe Le Brain Australia. 

DAI member, Mick Carmody from Brisbane in Australia, continues to host the weekly online support groups at a time suitable to those members living in Australia, New Zealand, Japan an other countries in time zones similar to them. Well done and thank you Mick for your dedication and enthusiasm. The details for this regular support group is below;

Online Support Group for people with dementia in Australia

Hosted by Mick Carmody on  Tuesdays 1:00pm – 2:30pm
at ZOOM Online video (map)
This support group is run by people with dementia, for people with dementia, and is a meeting place for people diagnosed with all dementias including Alzheimer’s disease or cognitive impairment under review. It is a confidential forum, not for professionals or interested others to attend, and the rule on confidentiality is that anything said in the group, stays in the group. Respect and dignity for all, as well as providing a safe and empowering environment are some of our goals.
Please contact [email protected] to register for this support group. The link to the group will be emailed to you the day before the support group meeting.
Go here for information about all of the DAI events and support groups.

Copyright: Dementia Alliance International

Dementia Research Wrap Up #4

Slide4Our latest Dementia Alliance International Dementia Research Wrap Up #4  for April 2015, generously provided and written by Dr Ian McDonald.

Thank you Ian.

Over the past few weeks there have been a few advances in relation to treating the pathological signs of dementia (in the brain). This means trying to get rid of those toxic proteins which cause brain cells to die and memory loss and other dementia related symptoms to occur. While this news is always exciting to hear, most of this research being reported on is in its earliest stages and some of the trials are yet to move from animal testing. So while small steps are being made, a long road is still ahead. I’ll give you a brief overview of three of these new trials recently reported on.

Research out of Australia has shown that an ultrasound scanning technique can reduce and remove amyloid beta plaques from the brains of MICE with Alzheimer’s disease. The results, published in the Journal Science Translational Medicine, showed that applying the ultrasound technique on mice with Alzheimer’s disease removed amyloid beta plaques from the brain, and in some cases, cleared the plaques completely. Treated mice were also found to perform better on a variety of memory tests, indicating that it may also reverse the symptoms of Alzheimer’s disease.

Another lot of Australian research has provided evidence towards an infrared light therapy being able to treat Alzheimer’s disease. In this mouse study, published in the journal Alzheimer’s research and therapy, daily infrared light therapy was able remove and reduce the levels of toxic proteins and plaques associated with Alzheimer’s disease.

So while both of these approaches have been able to break up the plaques which are considered responsible for Alzheimer’s disease onset – so far the results have only been seen in mice. The skulls of mice are much thinner than those of humans and thus the approach would need considerable modifications before clinical trials can be undertaken in humans. We’ll certainly keep posted to see how this research progresses.

Moving along a bit further, results were also recently released by a pharmaceutical company called Biogen showing that a drug called Aducanumab has had promising results as an Alzheimer’s disease treatment during a Phase 1b clinical trial.

So what is a Phase 1b study? They are intended to demonstrate ‘proof of concept’ and confirm a hypothesis, while also evaluating the safety, tolerability, and efficacy of the experimental treatment. If the results are promising, the researchers will then move into larger trials and longer term trials, known as Phase 2 and 3.

In this their analysis of the results, the researchers found that this drug was able to reduce amyloid plaque levels, and in turn slow down cognitive decline in a small number of people with early stages of Alzheimer’s disease. So with these results, the researchers will now move into larger and longer term phase 2 and 3 trials and assess further if any side effects might occur as a result of taking this treatment.

So while it can always be exciting to hear about an Alzheimer’s disease breakthrough it is important to delve further into the results and see exactly what they say. I would also recommend anyone wanting to participate in a research clinical trial to have a read of some information on our website around what’s involved when participating in a research trial – http://dementiaresearchfoundation.org.au/whats-involved-participating

To read about these studies in full have a look through our blog here – http://dementiaresearchfoundation.org.au/blog

Last Night I wept, by Laurie Scherrer

Source:lugenfamilyoffice.com via Google images
Source:lugenfamilyoffice.com via Google images

This week we have a blog written by one of our members who has very generously agreed to share with you. Laurie writes beautifully about the losses, tears and sadness, but also acknowledges her ability to rejoice and be joyous.

Last night I wept.

I wept with an uncontrollable cry that consumed my throat, my heart and my gut.  Wrenching from me the feelings of guilt, loss and fear that have been held inside and stripping away every ounce of joy and hope.  I wept for the loss of my plans and dreams for life.  I wept because I know I am no longer what or who I was and am afraid of not being able to control the evolving me.  I wept for loosing my freedom to get into the car and go & do whatever/whenever.  I wept for the lost memories that now are only photographs to me.  I wept for the financial burdens this has brought.  I wept for my family and the changes they will have to make and the challenges they will have to endure.

There was no consoling me for there was no comfort for the overwhelming grief of what was and what is to come.  I wept until my shaking body gave in to exhaustion and I drifted to sleep.

Dementia (Alzheimer’s, FTD, LBD, etc.) doesn’t just happen over night.  It slowly robs us of our past, our present and our future.  Bit by bit taking away the person we were as it slowly eats away our brain.  I can longer be the Laurie I was.  It has robbed me of the ability to have a successful career, entertain large groups, enjoy parties, drive to see friends or relatives, or even keep up with household tasks.

It would have been easier, if I didn’t have the transition of knowing what is happening to me.  It is difficult seeing myself become less responsible and more dependent.  It is frustrating when confusion takes over my ability to reason, think, communicate and comprehend.  I am still Laurie, however I know by the way people treat me and by way I react, I am different – I am changing.  And at times I am afraid.  And at times, I weep.

But Laurie can still rejoice…

Today, I rejoice.

The weeping is over, the day is new and I am so thankful for all the things I can still share and accomplish.

I’m thankful I can laugh with Aunt Joyce while getting a manicure, and laugh with Roy over the beautiful colors of the huge bruise on my butt (fell on ice), and laugh with Becky over the ridiculously difficult puzzle I gave her.  I’m thankful there is joy in the little things.

I’m sure my emotions will once again invade my happy space and require some grieving time, but not today.  Today, I am going to laugh and enjoy all the beauty in my life.   Know any good jokes?

Thank you Laurie for allowing us to share your wisdom and insight.

Author: Laurie Scherrer Copyright 2015
Editor: Kate Swaffer

Seeking volunteers

volunteer
We are seeking the support of more volunteers, with and without a diagnosis of dementia.
Dementia Alliance International, an advocacy and support organisation, of by and for people with dementia. We are also a registered not for profit organisation thanks to the very generous donation by Dr Richard Taylor PhD. 
A few of our Board members, and some members of our Circle of Friends already volunteer significant amounts of time and expertise to run DAI, and some are working for huge amounts of time to run this group. 
We also currently have some very generous support from one person without dementia, who has informed us she will only be available to continue with assistance until July this year.
We have no regular funding, although last year a few members personally raised enough funds to support six members to attend ADI Puerto Rico, and this year, we have had limited funding from ADI since our collaboration with them, also only for use to support members to ADI Perth and certainly not enough for more than a very few to be able to attend, plus attendance at the two WHO meetings.
It can be frustrating trying to be an active member of any group, but specifically in this one due to our own symptoms of dementia it can be more difficult. 
Everything takes much longer. Sometimes we forget to do things we promised we'd do. Sometimes we even forget we said we'd do them. Members might find it frustrating, and due to their own symptoms of dementia, may not be able to be more supportive in the running of the group, but as members, they still expect a lot. Sometimes there are misunderstandings, personalities get in the way, and the D-factor is hard for us ALL to live with, even those members working hard to live better with dementia than others think possible.
We ALL have dark days, when it seems it would be easier to give up and cry.
The more we give to each other, to this organisation, and indeed to our own communities, the more we get back, and we need more people to give of their time and expertise to support the work of a very few members. Please consider actively volunteering rather than waiting for someone to contact you.
Specifically, we need people who would be able and willing to undertake some administrative support including the following;
  1. Support as required for taking and typing up minutes of meetings (in Australia, this is often at 6am - athough we record the meetings, so they can be done after!), assisting with editing and other administrative assistance as required.
  2. Support with social media and our website
  3. Mentoring new members
  4. Managing our online programs, including setting up the Event brite invitations, managing the time zones, etc. To give you an idea of what this entails;
    • We have a monthly Webinar called A Meeting of the Minds, usually with guest speakers
    • We run weekly support groups in two time zones
    • We run monthly cafes called Cafe Le Brain
    • During Dementia Awareness Month in 2014, we ran weekly Master classes and would need assistance with this if we repeat them later this year
    • We have a YouTube channel which occasionally requires support, e.g. uploading of new videos
  5. Some support with newsletters, marketing, and any other thing that might be requested of us, including presentations and other material to support attending or presenting at conferences.
Also, an update on the Wish Project we were working on, including the possibility of producing a book of wishes and images, is not for any organisation to use to sell, if it gets completed, it will be for promoting our members wishes. However, if there was a suitable way DAI could turn that into revenue raising, obviously with appropriate consents, it may be worth considering.  All funds would go to members and services; it costs money on a monthly basis to run DAI, which we don't have other than from some generous but only occasional donors.
If you don't have time to volunteer, but can afford to make a donation, then please do so. If you are attending any of our Webinars, and can afford to donate at the time you register, then also please consider doing so as it costs us money to run these events, for which we currently have no regular funding. 
What we can't do alone, we can do together.