#Hello from one young carer

On Day 16 of World Alzheimer’s Day #WAM2019 we highlight the story of one young care partner whose mother had young onset dementia.

It is important we are remember that children of a parent living with younger onset dementia are too often the invisible care partners and are not adequately recognised by health care providers, if at all.

An Australian researcher, Karen Hutchinson was researching the impact of dementia on young adults and children. Her work identified four common experiences of young people living with a parent with younger onset dementia, which included the emotional toll of caring, keeping the family together, grief and loss and psychological distress.

This is one young care partners story, first published in Karen’s research, then republished with permission in Diagnosed with Alzheimer’s or another dementia: A practical guide to what’s next for people living with dementia, their families and care partners [1]

As an only child of a single parent X recalls seeing changes in his mum from about 8 years old. He lived in a small community where someone labeled his mum, at 42 years old, as a drug addict when they noticed some changes in her. Subsequently X was no longer able to have friends over to his house. He did not know what was happening to his mum, which he found hard as he could not explain to others what it was.

He was very protective of his mum and recalls how his friend pointed out to him when he was 11 that he was doing things that a parent normally did. Unknown to him he had started gradually to do things that his mum used to do. It was many years later before he knew her diagnosis of dementia.

When X was about 13 he hung with the ‘wrong crowd’ and did not attend school regularly. He was sleeping rough at nights to get away from home and drinking alcohol. He knew this was wrong but he needed to escape from his unpredictable home life. There were no boundaries placed on him so he was free to do whatever he wanted. His family and mum’s friends no longer visited so basically they were left alone.

They moved to a different area where X was soon labeled a ‘trouble-maker’ by the first school he attended. He then transferred to another school and it was there that finally a teacher took an interest in him but the fear of being separated from his mum made him stop disclosing what was happening at home. He recalls having some challenging times at school and felt he did not have much in common with his peers.

Thanks to a supportive teacher he remained at school until year 12 and this provided him with some ‘stability’ in his life. He did want to go to university but knew this was not going to happen and felt a real sadness about this. A supportive teacher helped him through this time and gave him hope for the future.

They faced financial hardship as there was no money for food and bills so he had to juggle school, paid work and caring for his mother. This eventually took its toll after leaving school where he ‘reached a crisis point’, he needed to escape and be like his friends free to leave home.

On reflection he felt he may have been depressed but his focus was on looking after his mum and felt there was no help for him except escape to the pub more frequently. He recalls the time when he finally asked for some help, a family member told him that it costs money and he wouldn’t be able to afford it, so he did not look into it further at this time.

His crisis worsened and he moved interstate as he wasn¹t coping but he organised his extended family to look after his mum before he left. He noted that very soon after his leaving community services were organised to support his mum. He felt lots of guilt but contacted and visited his mother frequently until he eventually returned home feeling stronger in himself to take over her care again. He felt no one could care for his mum as well as him because he loved her.

This complex and challenging situation continued whilst juggling paid work and his demanding caring role. Finally with the added benefit of maturity he realised that services and care for his mum was something they were entitled to and not just someone doing them a favour. With this new insight he felt more confident and empowered to get the help they needed. He now recognised himself as a carer and obtained financial support and gained legal advice with regards to managing his mum’s financial affairs. He recognised too that he needed a plan for the future. After many frustrating months navigating the complex process of arranging a suitable nursing home placement for his mother, he was successful. He reflected that ‘you shouldn’t have to jump through hoops to get it (services and residential care).

When his mum finally was accepted into a nursing home he remembers this time as a particularly emotional and difficult period where he felt he had failed her. He thought his life was spinning out of control but he knew it was time to be her son again. He was able to spend quality time with his mum without all the responsibilities and also finally start to sort out his own life.

‘I think having someone to talk to who knew about what was going on, would have made things better for me too. Because I just felt really alone. ‘Didn’t feel like I could talk to anyone about that stuff’ he reflected.

Stories in Karen’s research, and from DAI members reflect this is experienced by many young people in a similar situation to this young man.

You can also read the article by Karen Hutchinson, Chris Roberts and Susan Kurrle in the Australian Journal of Dementia Care, Invisible carers: Young People Caring for People With Dementia.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

 

[1] Swaffer, K & Low, LF. (2016). “Diagnosed with Alzheimer’s or another dementia: A practical guide for what’s next for people with dementia, their families and care partners”, New Holland Publishers: Sydney, pp 253-254.

 

 

DAI supports StepUp for Dementia Research

Media release

#Wam2019 Day 13

 

Like many other countries now, Australia has now launched a platform to connect researchers with people with dementia and their care partners or families, to increase opporunities for research about dementia.

Dementia Alliance International is proud to become an Organisational Champion with StepUp for Dementia Research.

StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals – both with and without dementia – with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure. We make it easier for the brightest minds in research to connect with people willing to donate their time.

Currently, there is no systematic and inclusive way in Australia for people with dementia to express their interest in participating in research. For researchers, recruiting participants for dementia-related studies is costly and time consuming. Delays in finding the right people can result in studies taking longer to deliver, often requiring funding extensions. Insufficient study samples limit the effectiveness and scope of research – the difficulty researchers face when it comes to recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.

The initial launch of StepUp for Dementia Research will cover New South Wales and Western Australia, ahead of nation-wide scaling in the coming year.

Register here for our next Webinar to learn more about StepUp for Dementia Research.

#Hello, my name is Kate

Another #DAI #Hello story, this time from DAI co founder, Kate Swaffer.

Hello, my name is Kate Swaffer. I am the current Chair and one of eight co founders of Dementia Alliance International (DAI). I received a diagnosis of the semantic variant of Primary Progressive Aphasia just over 11 years ago at the age  of 49, although at the time I was told it was Sementia Dementia when first diagnosed.

The first 12-18 months were spent in fear and even thoughts of suicide. I cried for weeks, expecting the worst. My whole family loss hope for our future together.

Why? Well, not one person, including health care professionals told us there was still a good life to live, even with dementia.

Then through Dr Google, I met the late Dr Richard Taylor online, and first through his writings and then chatting via email and google hangouts,  I then started to realised my life could go on. I used to tell him often, he saved my life!

The other life saving thing that happened, was being at university as they simply saw me as a person with acquired disabilities, and supportd be via their Disability Services to continue to live my life!  This link takes you to an article I wrote about dementia, rights and disability.

Studying for me was a hobby, so it was meaningful, and fun. It also has the benefits of neuroplasticity, for which there is growing evidence for its value in terms of rewiring our brains.

Then, and now, most people have the very wrong misperception that a person diagnosed with dementia goes from diagnosis, almost immediately to end stage, almost overnight, even many of the health care professionals.

It may be at an unconscious level, but most people who are newly diagnosed are still being Prescribed Disengagement®, also a reason that keeps me motivated to contiue to be an activist for changing what happenes at the time of diagnosis, and campaigning for rehabilitation and other disability support for us all.

At best, we are told to get acquainted with community or aged care services, and to get our end of life affaris in order. We  rarely receive referrals to disability services, or other allied health professionals such as speech pathologists to suppot language and communication disabilities.

This lack of post diagnostic support is a major breach of o ur most basic human rights.

I’ve written books and many articles since being diagnosed with dementia over the years, and continue to do so, as well as being very involved in research about improving the experience of diagnosis and quality of life for all people with dementia.  I’m deeply grateful that Richard Taylor wrote and recorded a beautiful review of my first book, What the hell happened to my Brain: Livng beyond dementia.

My passion and goal is to empower people with dementia to live more positively and more independently with dementia, for as long as possible, rather than  to only go home and prepare to die via aged care. The other is to find a way for us all to work together globally, to advocate for global change.

Kate Swaffer © 2019

Note: Whilst many people know me, there are also many new DAI members who may not.  Hence, why I am saying #hello.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Tomofumi Tanno

Tomofumi Tanno says hello, all the way from Japan, but via a presentation he made in ADI Chicago last year!

Tomo is a remarkable dementia advocate living in Japan, and last year, with the support of Kumiko Magome, who translated for him on this occasion, Tomo talked about what it has been like, being diagnosed with younger onset dementia at the age of 39.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Valerie Schache

Special thanks to DAI member, Valerie Schache for saying #Hello today, the continuing blog series we are publishing for Dementia Awareness Month/World Alzheimers Month. #WAM2019

Image source: Valerie Schache

Hello my name is Valerie Schache (Val). I’m 67 and I live near Ballina NSW Australia. I have dementia and I continue as the long term care partner for my husband with complex needs since 2004 . I was diagnosed August 2015 when I was 63. I was not supported, just given a dementia drug and ‘bye’. I’m still not tagged; I don’t fit the requirements for NeuRa Frontier etc and am left to my own devices to find a way through the minefield of deficits.

My paid skills were as acupuncturist physiotherapist including complex pain in de-mentia aged care. I’m also a life time farmer. I thank my country upbringing and wise parents who included me in ‘Why is this so’ type of discoveries. I have massive cognitive reserves to cope with the diverse defi-cits says my neuropsychologist assessors. We pioneered in farming and I in allied health and I now pioneer best health practices in the dementia space. 

I Thank God for DAI [Dementia Alliance International]. I was unravelling – not supported – not being believed; stigmatized and isolated to near oblivion and self harm.

My first DAI zoom in 2016, with a mob of diverse people globally with dementia—I laughed for the first time post diagnosis as I participated; I didn’t have to pretend in this group. I was encouraged to seek the latest ideas and I improved cognitively with the Bredesen type protocol. I then got angry that the ‘establishment’ weren’t right, that nothing could change a dementia journey. I became motivated enough to give back and educate for inclusion of my dementia disability—my human right; for suitable rehabilitation to keep me well and kindness. I have pre-sented globally nationally and now locally. Facebook has been my ‘work’ pre-dementia so I now also have an active group ‘Val’s journey –dementia is a word not a sentence’ and comment often on other sites. I am gifted at reading research papers and gleaning the nuggets of change for the better from diverse sources. 

Advantages of dementia: yes, there are some.

I’ve found who my handful of friends really are. My personality type changing deficits means I’m now stronger minded. opinionated; my language is colorful, pithy and sometimes to the point. My ‘bull-shit’ meter is accentuated and I certainly won’t be patronised or treated as less because I have a neurodegenerative disease. I tackle things from the front foot.

Yes I can only now do one thing at a time– but then so do most men. Passionate, fearless bold as a hyena I help tackle issues especially if injustice is involved. I can still read a scientific paper of any genre and give you back six points in plain speak to any audience. My considerable savant knowledge is exposed and I’m well read. 

Disadvantages of dementia: yes!

In my ‘bestment’s’ words ‘It’s a pain in the ‘butt’ —I want my old Val back’ – it wont happen this side of eternity but I’m committed to her and we support each other and its ongoing. We are a great team. I struggle to be OK with the flamboyant new me. I have constant grief as I have brain ‘rat gnaws’ and I wonder what’s gone this time and can I get around it!

I hate having disturbed bodily functions; to always be reminded to remember what I need to take especially if I am distracted. I hate needing to pace myself, and accepting increasing support from others.

To be told ‘you don’t look like you have dementia’ – deep breathe Val– that is such an insulting reflex comment—one you would not say to someone with diabetes etc.

I have a DNR bracelet and all our legal affairs are in order so I don’t have to think about that part of the future except with joy at going home. 

I know dementia’s for over fifty years, observation and then worked as an acupuncturist physio for 32 yrs; a decade in a locked dementia ward and since 2005 have supported dozens of friends to die with dementia. But I say dementia should be rare—not an epidemic. 

What’s changed since the 1950’s?

Lets consider plastics, diesel fumes, atomic bombs, margarines and cholesterol issues/reduction and less sleep /increased stress and now obesity. It’s onset can be slowed even preventable with diet, BP/ Weight control. I say ‘If great grandma wont recognize it , its not food’ e.g. margarines. Hundreds of us in dozens of countries are creating a quiet revolution of change- confounding the ‘experts’ by reversing /slowing dementia– bringing hope to those able to follow a personalized precise protocol.

Back to basics of having health gut biomes for a healthy brain. Removing allergens including foods and environmental toxins especially mold. Team Val use hair analysis blood tests supplements and other hands on best practice to improve me holistically. Being mindful, stress controlled, sleeping soundly, very kind to yourself and at peace with those around you. Live in the moment as it is your pre-sent. I have hope, I have significantly improved in many markers since 2015 and I have dementia. 

Final words…

Its not the future I would have chosen, but we are making the best of this deal and giving back . We laugh and love freely. I aim to ease the life of all the other thousands pre and post dementia diagnosed. I’ve always smashed ‘glass ceilings’ so I’m breaking down the myths /assumptions about de-mentia, boldly and in every avenue presented to, or created by me. 

Don’t be like dementia, it doesn’t discriminate, it is a disability, and it is unkind. Be aware not to discriminate, be inclusive and be especially kind to all, and do everything to slow or prevent the onset of dementia for your own sake. 

Valerie Schache © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Emily Ong

Wow, it is already Day 9 of Dementia Awareness Month / World Alzheimer’s Month #WAM2019!

Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!

Today,  we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore.  Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia  find that by sharing with others, they find strength, and give others hope.

Image source: Emily Ong

Hello, my name is Emily Ong

June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.

I tried so hard to recall but NOTHING was retrieved.

It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.

By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.

Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!

I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?

At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.

It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.

Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).

I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.

Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.

My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.

Emily Ong  © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Dr Ting Fei Ho

On Day 6 of Dementia Awareness Month (World Alzheimer’s Month), we share a daughters heartwrenching story of her mother. This year, we decided as part of the #Hello daily series of blogs to try and more fully represent people living with dementia, but also to share some stories from family members as well.

Today, for the first of our carer stories, we share that of a daughter living in Singapore, who has been fighting for the rights of her mother who lives in a residential aged care facility (nursing home) in Western Australia. Ironically, this story also highlights the denial of many human rights, and abuses of an elderly mother in Western Australia, part of a country where there is a currently Royal Commission into Quality and Safety into Aged Care! Thank you Ting Fei for sharing your mothers story.

Image source: Ho Ting Fei

Hello, I am Ting Fei. I am my mother’s voice for her dignity, personhood and justice. My mother has numerous medical issues, and is also diagnosed with dementia (but she suffers from neglect and abuse). She now lies immobile, helpless, with severe muscle contractures, in an aged care facility in Perth, WA, Australia.

My mother is a 90 year old Chinese lady, widowed in 2012. In July 2016 she walked (with a frame), fairly independent and able to perform basic tasks of daily living, into this nursing home. But, in less than two years, she is reduced to total dependency on full support for her daily living in a wheelchair. How did all these happen in a place her guardians (EPGs) boasted as a “5-star hotel resort style” aged care facility? What has gone wrong?

Here are some of the grotesque facts behind the scene at this river-front “resort”:

  • Her sons first denied the diagnosis of cognitive impairment and promptly brought her to change her will. They took control of her finances and issued a debit card in her name. Within a year, my mother suffered two falls in Perth. The second one was what prompted the sons to place her in this “resort”.

There was a history of “mild” stroke and delirium before the second fall but the medical records on this mysteriously disappeared. There was a warning about risks of falls but this was never heeded. Once she was in this “resort” her sons, who also applied to be her guardians, left almost all care to the general practitioner (GP) and care-givers at the home.

  • The GP has this strange conviction that all declines in general health, cognition, mobility, ability to feed an swallow, loss of muscle mass etc are part of the natural process of ageing. Hence no further management is necessary unless for acute conditions and emergencies. He does not believe that a geriatrician can better manage my mother in her state of dementia and failing health. So my mother was never prescribed any form of medication for her dementia; no post-stroke rehabilitation and no systematic follow up for her failing health.

But this GP does not hesitate to prescribe heavy doses of Panadol to my mother. He later added Endone (an opioid drug) to my mother, for her painful muscle contractures, with no adherence to safety protocols or monitoring of side effects over several months.

  • The care coordinator at the home who professes to be a trained sports physiologist believes that physiotherapy is harmful for my mother. Hence no active or passive physiotherapy was prescribed for her.

Under such care, my mother rapidly deteriorated in her mental, physical, and nutritional state; from being mobile to full dependency on a wheelchair, in less than two years after admission to this home.

There were a series of unexplained and poorly documented falls resulting in bruises and injuries, including one with frontal impact to her right eye ball. She suffered pressure sores with one deep chronic sore on her left ankle that only healed after more than one year. She suffered recurrent skin blisters and bruises over her body and limbs and also recurrent urinary tract infections. Her puffy face from over-dose of steroids was bragged as a sign of good nutrition with weight increase. Many more healthcare issues occurred that are too lengthy to describe.

What dignity is there when she is found soaked with urine dripping from her wheelchair, being undressed by two African men, with food left for hours in the mouth…..?

What person-centered care is there when she is isolated in a place where she had language limitations and where she does not get her familiar Chinese food?

What quality of life is there when she only gets a wheelchair/bed to sleep on, a roof over her head and three meals that she hardly can eat?

In three years I exhausted almost all avenues of help that I can ever think of in WA, a state that has no law against elder abuse. Where there is no law there is no prosecution for offenses and no protection.

My pleas for better quality of care and protection against abuse fell on deaf ears. Despite all the evidences available, no one was interested to know. The State Administrative Tribunal and the Supreme Court both concluded that my mother is happy and wishes to stay at this home; that her guardians and doctor have always looked after her best interest.

WHO defines Elder Abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”.

In the hands of people my mother loves and trusts, these are the tragic experiences she silently suffers ……. “a scandal beyond belief” indeed.

Ho Ting Feo © 2019

Footnote: Many public self advocates are regularly accused of not having dementia, or are chastised for ‘grossly misrepresenting’ dementia. Most are, however, well aware of what is ahead of  them, which could be the same as it is for Ting Fei’s mother.

#Hello, my name is Bobby Redman

On Day 5 of Dementia Awareness Month / World Alzheimers Month, we share Bobby Redmans story.  Thank you Bobby.

Note: as many members of  DAI prefer to call it this month Dementia Awareness Month, so that anyone who does not have the Alzheimer’s type of dementia does not feel excluded.

Image source: Bobby Redman

Hello, my name is Bobby Redman.

In 2015 at the age of 66, I was given a provisional diagnosis of mild cognitive impairment / fronto-temporal dementia after experiencing a range of symptoms, including a noticeable change in my ability to perform day to day tasks, some communication issues (both in speech and in my ability to follow conversations); and changes in my personality, picked up by close friends.

Since then, in spite of my scans identifying some shrinkage of the brain, with gaps appearing in my frontal lobe, the neurologist has been reluctant to confirm the diagnosis, given that “I am functioning too well” (His words not mine). I believe that some doctors are reluctant to give the diagnosis of dementia, thinking that they are being kind. With no cure being available, at this stage, they seem to think that an early diagnosis is pointless.

This is frustrating for those of us living with dementia that don’t see a diagnosis as an end, but as an opportunity to develop a support plan to include available interventions to assist us to maintain our levels of functioning.

Recent psychometric testing has confirmed what I have been telling the specialists for a while, in that my cognitive skills are significantly declining along with indications that my motor cortex is impacted, resulting in a decline in my motor skills. This confirms that I have a neurodegenerative disorder, and further tests are underway to see if they can give it a name – this would be far more important if there was any treatment / cure for the condition.

Before retirement, a year prior to my diagnosis, I practised as a psychologist, working with people with a disability. Much of my work was working with people and their carers to develop programs to assist people to function to their highest capacity, on a day to day basis.

This professional skill is why, I believe, that I continue to function “too well” in my doctor’s viewpoint. Trust me, it is not easy to be observing my own decline and capacity and to continually be looking for ways to re-habilitate myself, it would be wonderful to have a professional doing this for me, but the mental focus required for this is part of my personal program, so I don’t complain.

As I start to slip and am obviously less competent than I had been, some of my regular friends are starting to realise that things are not going as well as they appear. I am lucky, many of them are stepping forward and offering support – coming from a strong volunteering background, many of my friends, whom I have volunteered alongside are good, kind people wanting to help.

They don’t always fully understand, and I have to get better at letting people know what sort of things would help me….I am trying!

My newer friends are those who I have met through our work in dementia advocacy. This group of friends are like a global family; a family who you know is there to back you up when you are having a bad day. Without organisations like Dementia Alliance International (DAI) and Dementia Australia , I am unlikely to have ever got to know these people and who’s to say that I would be feeling as positive about my daily living if this had been the case. I thank my lucky stars, each day, that I have this group of amazing people on whom I can count – they give living well with dementia, real meaning.

Bobby Redman © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Juanita Hughes

On day 4 of World Alzheimer’s Month, #DAI member Juanita Hughes, from Brisbane says #Hello.

These stories highlight the many different experiences people have in terms of getting a  diagnosis, and how they choose to live with and respond to what is a very difficult diagnosis to be given.  Thank you Juanita for sharing your story.

I am 54 and I have young onset early stage behavioural variant frontotemporal dementia (bvFTD)

Image source: Juanita Hughes

I have a strong family history of what we now know is bvFTD. My grandfather was quite some time along the dementia track, and he was misdiagnosed as having Alzheimer’s, even though, in retrospect, he had shown classic symptoms of bvFTD.

An older brother also had the same condition and we believe their father also had dementia, and may be others in his heritage.

My father has lost his sister and two younger brothers, and has another younger brother undergoing testing for this condition. After dad’s younger brother died his daughter a nurse started serious research into the condition and discovered the research group Frontier, located then at the University of New South Wales research group – Neura, which specialised in frontotemporal dementia research.

They were keen to have my father joined them as a research participant in their main research project and threw them he was diagnosed as having bvFTD and the genetic mutation involved was discovered – C9orf72. My sister and I indicated that when they started research that was applicable to us we were willing to join.

I have a background in science research, so once this was discovered I read all the scientific literature that about this condition and this mutation that I could put my hands on. This included the current diagnostic criteria for bvFTD. As soon as possible I had myself tested for the mutation and received a positive result – I had the mutation too.

This had been two years since my dad’s initial diagnosis due to delays within the free State Government sponsored testing system. The genetic counsellor told me that she could not tell me much about my prognosis except that it was not case of if but when I would get the disease. This result didn’t actually surprise me as I was already aware of minor changes consistent with the diagnostic criteria.

Within a few months of my genetic result, I had convinced my GP to refer me to a neurologist for testing. My initial neurologist was convinced that I probably had dementia, but he specialised in movement disorders rather than dementia so he referred me onto his colleague who runs a clinic in atypical dementias.

So about seven months after the genetic diagnosis I received a diagnosis of dementia – definite bvFTD with the early signs and known genetic mutation leading to bvFTD. The neurologist told me that I was extremely early in the dementia journey, and that he had never diagnosed anybody this early. Then wanted to put me onto pharmaceutical interventions which I adamantly refused.

A few months before getting my genetic diagnosis, Frontier in was able to obtain funding to run a longitudinal study to endeavour to identify early changes in biomarkers/scan data for Dominantly Inherited Non-Alzheimer’s Dementias – DINAD. My sister and I and my cousin all became participants in this research. The genetic counsellor of this research was pleasantly surprised at my knowledge of the disease and suggested I become a genetic counsellor myself. So this year I have commenced studying Master of Diagnostic Genomics, with a plan to continue into a PhD program.

Once I had my diagnosis I was no longer eligible for the DINAD program, and volunteered to join the same research program that my father was in. I went into my first assessment with this program only to find that not only had they placed me in the research program I thought I was joining, but many other researchers wanted me to join their projects as well – so many that I lost count. Because I am so much earlier in my dementia journey than the standard research participant I can give a different perspective to the research so they are all keen to have me participate.

I would like to repeat here part of posts (edited) I put on the Facebook page – Living Healthy with Early Onset Dementia – on August 22nd.

Saying this may sound crazy, but I’m grateful for the genetic mutation underlying my dementia … I have heard too many stories of the difficulty people have in getting an accurate diagnosis or any diagnosis at all, and my heart goes out to you all.

I am glad that I have this diagnosis while I am still able to describe what it feels like to be on this side of dementia as researchers characteristically state that people with bvFTD lose the capacity to assess their own changes early in the disease process. I can see this with my dad who is in late mid stages of the same disease. He variously denies any problems or says he’s getting better, whereas my mum and I can see his degeneration.

The downside of this is that researchers don’t bother to ask people with a lived experience and just rely on carers and clinicians observations to describe the characteristic diagnostic conditions. I am in the unique position to describe this lived experience, as most people with this dementia are diagnosed too late, or haven’t read the scientific literature to know what erroneous conclusions to challenge.

…Within a few days of my diagnosis I had applied to join Dementia Alliance International and attended my first support meeting within two weeks of the diagnosis. I have now joined their action team. I have become an advocate with Dementia Australia and applied to join the Dementia Australia Advisory Committee.

When I joined as an advocate with Dementia Australia, I agreed to become part of a focus group. The Australian Commission on Safety and Quality in Health Care asked Dementia Australia to assist with rewriting a Cognitive Impairment Fact Sheet to be used in healthcare settings. I volunteered to help in a focus group in my hometown but before that happened I had to come down to Sydney and was invited to join the Sydney group.

As a result of participating in this project I’ve been asked and agreed to three more. The next week I talked with a researcher from a group that has been commissioned to do research on behalf of the Royal Commission into Aged Care Quality and Safety. Late in August I agreed to be filmed as part of a video to be released Dementia Australia Action week.

In a few days’ time I will be involved as a panel member representing those with a lived experience of dementia in the Decoding Dementia Mentoring Workshop which is assessing new technological innovations to help people living with dementia. In October, I will be speaking publicly about dementia for the first time. Dementia Awareness and Advocacy Team is a group that I joined in my local city, and I am speaking at their annual one-day forum.

These posts well describe my feelings and emphasises my motto:

Dementia Is a Journey – Not a Destination.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello from 49 people with dementia in NZ, Day 3 #WAM2019

Whilst we highlight many  individual voices of people with dementia through our #Hello blog series this month, in todays post, we share our “Meeting Of The Minds” Webinar from June, Living with dementia in New Zealand.

The research involved listening to the voices of 49 people diagnosed with dementia in New Zealand, and we thank Liz and Alister for their contribution during the Webinar. The slides and the Dementia Declaration are available to download below the video.

Download the power point slides

Download the NZ Dementia Declaration