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Mick Carmody presents at ADI2015

Day 4 Dementia Awareness Week UK 2015

For our blog on Day 4 of Dementia Awareness Week UK, we are publishing the presentation given at ADI2015 by Mick Carmody from Brisbane in Queensland, titled People can live well: even people with dementia. Mick is  Dementia Alliance International Circle of Friends member, and also hosts the online Tuesday support group run in the Australian/NZ/Japan time zones. His wife Sue took the video, and they have given DAI permission to publish it here and on our YouTube channel. Thanks Mick and Sue.

https://youtu.be/qw914-V0bNg

Below are his full speech notes, and the power point presentation slides as a PDF. Well done Mick, and thanks again for sharing yourself with us all.

People can live well: even people with dementia

By Mick Carmody ADI2015

People can live well-even people with dementia_Mick Carmody_ADI2015

Thank you for the opportunity to speak to you today.

It is an honour and pleasure to be here and share my experience of dementia with you.

We can live well with dementia and with your enabling help we will all live full lives.

In less than twelve months I have gone from  being bound by my own   insecurities, which  we all grow through, not leaving my comfort      zone. Now I have a reason to live. If I know I only have 6-12 months left, I am bloody well going to enjoy them. No time for that. Think positive, act positive, be positive.

I  am still here. I am still me!   

This is my story of living positively with

dementia, and about how I believe if we all work on making our communities dementia  friendly and accessible, more people will also be able to live well with dementia. It is also    about improving the care of people with  dementia, and an international advocacy    and support group of, by and for people with  dementia, that I am involved in.

HAVING   DEMENTIA DOES NOT MEAN MY  LIFE    BEFORE DIAGNOSIS NO LONGER MATTERS.           

I AM NOT DEFINED ONLY BY DEMENTIA.        

I have a Personal history!      

Born in Wangaratta ,Victoria, a normal family and    schooling to year   11,   one of five, mother       still alive, 88yrs old.       Moved to Corowa       NSW for 28yrs,  then Brisbane for   8yrs.

My careers in Hospitality Industry, sales       and a Truck driver.

Married   38yrs.    Wife    Sue, Daughter     Melissa     and Son in law Warren; Grandson,  William, and Son, Scott.  My hobbies are very amateur photography, and pre diagnosis was golf, and I enjoyed reading.

I sought medical advice due to memory,  cognition and balance issues, and some    unexplained     ‘episodes’.     After waiting six months to see a neurologist an episode caused me to be admitted to hospital where I was ignored by nursing and clinician staff which is due to lack of knowledge through education.

Twenty five days and two hospitals later a misdiagnosis. I should be happy that I did not have epilepsy was delivered by the       neurological     registrar. I was told it was all in my head.

After being referred to a geriatrician who  spent thirty minutes he said he believed it to be either Lewy Body’s or FTD. He sent me off     to have a PET scan.

Diagnosis: FTD.

He told me it was terminal. He told me to get   my end of life affairs in order sooner rather     than later then go out and enjoy myself!!   

What many people don’t know is that  dementia is a terminal progressive illness, and that there is only treatment for some       types of Alzheimer’s    disease.

There are over 20o types or causes of  dementias.  Currently there are 44.4 million  people with dementia in world, reported by     Alzheimer’s Disease  International in 2014.  Worldwide,  there is  1 new diagnosis  every 4 seconds.

There is NO cure. Therefore  we must be  supported to live well, for as long  as possible.

So I went home and gave up for 6-8 months. I went through the same as everybody else.   Poor me, I can’t have dementia. No. It’s not  me.

Then reality  steps in and “bang” on the back of the head. Not wanting to leave my comfort zone. Leave me alone; don’t ask me to get involved in anything. Boy oh Boy, did that change.

The early days consisted of guilt, anger at   myself, what have I done      wrong.  Can’t go    anywhere especially to a meeting with Alzheimer’s   Australia Queensland who only  offered limited help after I rang them because I did not know where to go or who to turn to.   A key worker for Younger Onset Dementia came out to see us, and she was really helpful in  making sure we had the right paper work in       place.

My wife is my full time carer. A huge job with little or no pay or recognition. Carers are “ANGELS IN DISGUISE. “I have been known to wander off and   not return. My family is like most. My eldest sister and brother in law who visit an know and understand. The rest, well, it’s their loss not mine

I have started writing poetry since my diagnosis I placed one on the AAQ YOD discussion forum. I was asked if they could use it in the AA news letter. Next thing I know my wife and I are on a plane to Melbourne to join an Alzheimer’s Australia consumer group where I became involved   with wonderful group of people in this organization. This really took me out of my comfort zone,

Then a lady I am proud to call my friend introduced me to the Dementia Alliance International. Again a group of people that welcomes you with open arms and they have the ability to bring you out of your shell.

With Kate’s help and push I now have a reason to live,  a reason to get out of bed in the morning.

Education   empowerment are the key if we are to reduce STIGMA. I am passionate about educating as many organisations, large and small about DEMENTIA FRIENDLY

We have all had someone say ” you don’t look like somebody with dementia, that’s only for old people”

My response is simply; “what does a person with dementia look like?

I now have the confidence to get out and spread the word about dementia friendly communities and also have the confidence to speak to you today. THANKS KATE.

Now I will read to you the poem that started everything.

WALKIN MY SHOES, IN MY SHOES

As I lay here in my bed awake still

Sleep I knowat some stage I will

Morning seems so far away

Sometimes I wonder if dementia will stay

I often wonder if I am really mad

Or, if this is real, it is really sad

Frontal temporal lobal dementia they say

Then younger onset dementia all  here to stay

Will get worse,  won’t get better, I am told

That there is no cure makes me go cold

I am amusing to my wife and family and all when I speak of long       lost past

Truth gets stretched a little as memory falls  from my grasp

It is about the only bright spot for my carer  my wife the love of my life

One day soon dementia will go away I say.

“oh I think its here to stay” says Suzie my wife

People stare and look at me strange, they don’t know or  care

If they understood they would not stare

Help me to make them see, it  is, it’s really me

Education is what is needed you see

Cognitive functions are getting harder each day

Simple tasks getting harder now, frustrated that this will stay

Always look forward, never look back

REMEMBER  to say I LOVE YOU every day,    could be the last     thing you get to say.

Dementia Alliance International is a group of  warm, caring, passionate people who are dedicated to the wellbeing of every person with dementia.

DAI has recently collaborated with Alzheimer’s Disease International (ADI) and have become the peak global   organisation    for people with dementia.

These people gave my life new meaning and gave me the confidence to speak out and be  heard. THANK YOU DAI

Dementia Alliance International  is a non profit  group of people with dementia whose vision is    “A world where  a person with dementia      continues to be fully valued.”

Dementia Alliance International  connects people diagnosed with dementia and    others who  are meeting  the  challenges of       dementia through Webinars, Master classes, Online Cafés, and support groups   — all accessible from the home or office through    the     Internet.  Contact them to learn more about    DAI, their programs and to inquire about the online support groups.

ADI’s Global Dementia Charter is: “We can    live well with dementia.”   

Members of Dementia Alliance International believe that.

I am living proof       it is possible. Thank you.

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

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!