HOPE - dementia.org.au · December 2006, three years after they first sought medical advice. His article, ... HOPE Newsletter 3 my unsEEn disaPPEaring wOrld: using wOrdPrEss tO caPturE

HOPE marcH 2012 issuE 10

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Happy New Year to all readers of HOPE, Alzheimer’s Australia’s newsletter for younger people with dementia, their care partners, friends, health professionals and care staff.

For new readers, the newsletter’s name is an acronym for Helping Other Possibilities Emerge. This is our first issue of HOPE for 2012.....and it’s full of hope.

Our Feature Article, entitled "My Unseen Disappearing World: Using WordPress to Capture Memories", is contributed by Kate Swaffer. Kate was diagnosed with younger onset dementia in 2008. Kate’s enviable resilience emerges as you read her very personal story of how she lives with dementia and how she uses it as motivation to live a fuller life.

As well as managing a full diary of Australian and international speaking engagements, and continually advocating for improved services for aged care and dementia, Kate has discovered the joys of ‘blogging’. She says that her blog, ‘Creating Life With Words’, gives her the mental energy to stay positive and keep going. Kate has taken things one step further and is collaborating with her new information technology friends to develop software that she hopes will help people with dementia better manage their lives.

We also have a carer’s story from Bob Leicester, and I think a lot of readers will relate to his situation. Bob started noticing that his wife, Allison, was displaying changed behaviours and thoughts when she was in her early sixties, in around 2000. She was finally diagnosed with Alzheimer’s disease in December 2006, three years after they first sought medical advice. His article, "Medi-Carer", in our Carer’s Story section describes their journey, from the length of time it took to get a diagnosis, to issues they experienced with hospitalisation. Bob offers advice to others caring for a loved one with dementia, as well as advice for service providers and researchers, hoping that sharing his and Allison’s experience will prompt some positive change.

Our Research Projects, News and Breakthroughs section includes a contribution from the DIAN project team based at The Mental Health Research Institute in Melbourne. D-I-A-N is an acronym for Dominantly Inherited Alzheimer’s Network, which is an international research initiative studying a unique group of people who are at risk of Alzheimer’s disease caused by a specific genetic mutation.

You’ll also find a summary of the recent Report of the Productivity Commission Inquiry into Disability Care and Support. Alzheimer’s Australia CEO, Glenn Rees, then outlines the impact Disability Reform will have on younger people affected by dementia, focusing on an issue that will resonate with many readers – access to age appropriate services that provide choice and meet individual needs.

The New Year sees a new schedule of Alzheimer’s Australia events and courses across Australia. There are activities and support groups for people with younger onset dementia, support groups and courses for carers and education and training events for professionals. I encourage you to read the Upcoming Events section, and call the National Dementia Helpline or check the Alzheimer’s Australia website for more information on events near you. Many of our activities and events are free and are open to all members of the public. Our local staff are looking forward to meeting you!

I hope you enjoy this issue of HOPE as much as I have enjoyed compiling it. Please send it on to your family, friends and networks, to help us to raise awareness of the issues faced by people affected by younger onset dementia. Please contact me if you would like to submit a story, have an idea or suggestion for a future HOPE newsletter article, or to be added to the HOPE newsletter distribution list.

Jenny Warren Project Officer Alzheimer’s Australia (02) 6254 4233 or email [email protected]

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FEaturE articlE

sOutH australian katE swaFFEr was diagnOsEd witH a yOungEr OnsEt FrOntO tEmPOral dEmEntia in 2008, at a timE OF HEr liFE wHEn sHE was wOrking Full timE, studying a dOuBlE tErtiary dEgrEE, vOluntEEring, caring FOr HEr cHildrEn and running tHE Family HOmE witH HEr HusBand. Kate now finds herself in demand as a speaker at national and international conferences, on a range of subjects from dementia to blogging. She is scheduled to speak at events as diverse as Alzheimer’s Disease International’s 2012 conference in London, and the 2012 Adelaide Fringe.

Residents of the ACT can see Kate in Canberra in June, when she speaks at Alzheimer’s Australia ACT’s Dementia Network forum, The Younger Person with Dementia and their Carers. Check this issue’s ‘Upcoming Events’ page for further details.

The photograph accompanying the article shows Kate addressing the crowd at Alzheimer’s Australia’s Fight Dementia campaign march on Parliament House, Canberra on October 13, 2011. Kate gave a heart felt account of her experience with dementia, joining other speakers including Judy Woolstencroft, a carer for her partner, Chris, who has younger onset dementia (see Judy’s article in Issue #9 of HOPE), Alzheimer’s Australia President, Ita Buttrose, and Alzheimer’s Australia CEO, Glenn Rees, Minister Mark Butler (then Minister for Mental Health and Ageing; Minister Assisting the Prime Minister on Mental Health Reform, now Minister for Social Inclusion; Minister for Mental Health and Ageing; Minister Assisting the Prime Minister on Mental Health Reform), Senator Concetta Fierravanti-Wells (Senator for New South Wales), among others, supporting Alzheimer’s Australia’s campaign urging the government to invest $500 million over the next 5 years in action that will improve dementia care today and reduce the number of people with dementia in the future.

This article also describes Kate’s newfound interest in information technology, especially the benefits of online collaboration with people with dementia, their families and carers from all around the world via her blog, http://kateswaffer.wordpress.com/daily-blog/.

Kate is a passionate advocate for improved services for people with dementia, especially aged care.

This is Kate’s story.

HOw tO suBscriBE and unsuBscriBE FrOm HOPEWe want to ensure HOPE is getting to the right people. If you know someone who would like to receive HOPE via email, please ask them to contact me at [email protected]. If you no longer wish to receive HOPE by email, please contact me and ask to be removed from our mailing list.

This and all previous issues of HOPE are published on Alzheimer’s Australia’s website at http://www.fightdementia.org.au/research-publications/hope-newsletter.aspx

Thank you,

Jenny Warren

An Australian Government Initiative: helping people with memory concerns

This issue of HOPE was supported with funding from the Australian Government Department of Health and Ageing as part of the Australian Government’s Dementia Initiative.

The views expressed in this work are the views of its author(s) and not necessarily those of the Australian Government.

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my unsEEn disaPPEaring wOrld: using wOrdPrEss tO caPturE mEmOriEsBy Kate Swaffer http://kateswaffer.wordpress.com/daily-blog/

Dementia represents the end of dreaming, a long and unforgiving one way odyssey into obscurity, clouded in a thick and unforgiving fog. For me, blogging has brought back the dreaming. It inspires me to write more, creating a repertoire of my memories and personal history files, ensuring I leave some sort of record or legacy for my children and husband to recall who I was and what I thought about. The excitement I felt with my first subscriber... and every time I get a new one, or some other feedback about something they have read... that I have written... something that also had meaning for them, or helped change their world in some small way, encourages me to keep going. It empowers me to rise above dementia and stay inspired and alive and I am certain it helps with Neuroplasticity and creates new pathways for my brain to continue functioning.

I have always used the analogy of the dementors from the Harry Potter series to represent how it feels having dementia, as if someone is sucking out my soul. Whilst working on my presentation to WordCamp Gold Coast 2011, I decided to look up what the Harry Potter site says of the Dementors. A Dementor is a Dark creature, considered one of the foulest to inhabit the world. Dementors feed off human happiness, and thus cause depression and despair to anyone near them. They can also consume a person's soul, leaving their victims in a permanent vegetative state, and thus are often referred to as "soul-sucking fiends" and are known to leave a person as an "empty-shell”. For me, this says it all. WordPress and blogging is helping to restore that empty shell, as my written words are not only a record, but a window into my soul for me and for my loved ones, and a way of refilling the empty shell. It has helped put the happiness back into my soul, and remove some of the despair.

Blogging on WordPress has also opened up a vibrant channel of dialogue and communication between my close family and friends as they can read what I’m thinking or have been up to, whereas if they wait to ask

The Fight Dementia National Campaign which includes a focus on younger onset dementia, awareness and funding has continued on for me. I spoke at the ‘March on Dementia’ campaign in Canberra on October 13 2011, have spoken at several service provider group forums and training sessions, and then as the key note speaker at the WordCamp Gold Coast 2011 conference in November 2011. There I shared my personal story of living with dementia and how I use it as motivation to live a fuller life. I talked about how blogging helps me to capture memories, and how it is becoming a personal history file, by way of words and stories embodying feelings and emotions. I also wrote an article for the September 2011 edition #389 of The Big Issue magazine which told my personal story of living with younger onset dementia. I have worked as an operating room nurse, a chef and executive in health care sales, and in 2008, I was working full time, studying a double tertiary degree, volunteering, caring for my school age children and running our home with my husband. My life was interesting, busy and very fulfilling.

I was then diagnosed with a younger onset fronto temporal dementia, and in spite of this hideous diagnosis, I managed to complete a Bachelor of Arts in Writing and Creative Communication in 2008, and then a Bachelor of Psychology in 2009. Using WordPress to blog and more importantly to capture memories has now become a significant tool in managing this disease. My blog has become the journal of my life, my thoughts and my activities, ensuring my memories are retained, not only for my children later on, but for me right now. Other social media like Facebook and Twitter has become important too, as they offer other social connections and ways to record my world. They all also have photographs, of people and events and activities, offering me yet another medium to recall my life.

Interestingly, the word Dementia is taken from Latin, originally meaning "madness"; no wonder we struggle against the myths! And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives, husbands, employees, bloggers… it is a tragedy that so many just see our deficits. My abilities are permanently damaged and my photographic memory is dead and buried! I read then I forget… I read then I forget… I read, I take notes, and then I forget… I blog, and it is always there. Computers and blogging have become my best friends as they constantly command my attention, edit for me, and perhaps more importantly push my brain to work hard every time I connect with them.

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me the next time we meet, I may have forgotten. It has given me a global audience, and therefore a global voice in my goal to bring about change. Twitter, Facebook and other social media sites help with this too, even though the challenge of using them is increasing. With WordPress, the usual start to my blog is to watch a tutorial… often the same one every day. I love the tutorials, even though forgetting the basic stuff frustrates the hell out of me. The researchers are saying that learning and memory are very dependent on brain plasticity, and learning and exercise increase the production of new neurons, which is why I choose to focus on my own brain plasticity.

I manage my health with a regime of Transcendental Meditation, prayer, self hypnosis, exercise and stretching, high level learning, positive thinking, massage, acupuncture, reflexology and a healthy diet. The other keys for me are to have as much fun as possible, and try to live in denial. And then I started blogging. This was initially from wanting to share my world with friends, inspired by the movie Julie & Julia, and as a way to try and discipline myself to write about my life and this journey for my children. Blogging pushed me beyond reaching out to health care service providers, motivated me to speak out globally, which in turn has shown me a new way to share my story with an even wider audience, thereby changing perceptions and destroying some of the myths about dementia. I am working as a consultant with a number of service provider groups helping them to improve aged and dementia care; I am collaborating with a theatre group to write a play about younger onset dementia.

FEaturE articlE continued

alzHEimEr’s australia is BlOgging tOO!

dOEs yOur mum Or dad HavE yOungEr OnsEt dEmEntia? arE yOu lOOking FOr inFOrmatiOn On yOungEr OnsEt dEmEntia and wOuld yOu likE tO talk witH OtHEr yOung PEOPlE in similar situatiOns?

I am working on an education resource pack for senior school children. In March 2012 I am presenting at Alzheimer’s Disease International’s London conference on Person Centred Care: An insider’s view, and Non pharmacological interventions for Dementia, and then in May 2012, I will be speaking at the biennial Alzheimer’s New Zealand conference Future Faces of Dementia.

Without the diagnosis of dementia, I would never have become involved in some of these exciting and innovative things, and in all seriousness, blogging has become a significant tool in sustaining my life. One brilliant ripple effect to evolve from blogging is the emergence of new IT friends, who are now collaborating with me to develop software to help those of us with dementia to better manage our lives. Troy Dean from Video User Manuals (see http://www.videousermanuals.com/ and http://tontodigital.com.au/) is working on this as I write. My life continues to be busy, interesting and very fulfilling.

Copyright © Kate Swaffer, 2011 All rights reserved. Subject to the Copyright Act 1968, no part of this may be reproduced, stored in a retrieval system, or transmitted in any form, or by any means, electronic, mechanical, photocopying, printed, recording or otherwise, without the prior written permission of the author.

tHE alzHEimEr's australia nsw BlOg, ‘yOungEr OnsEt dEmEntia and mE ‘, is a PlacE FOr yOung PEOPlE tO cOnnEct witH OtHErs, tO gEt inFOrmatiOn and HElPFul suggEstiOns and a PlacE tO BE listEnEd tO. cHEck it Out at HttP://yOungErOnsEtdEmEntiaandmE.BlOgsPOt.cOm/

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rEsEarcH PrOjEcts, nEws and BrEaktHrOugHs PrOductivity cOmmissiOn inquiry intO disaBility carE and suPPOrt

On 31 July 2011, the Productivity Commission provided its Final Report on the Disability Care and Support Inquiry to the Federal Government. Alzheimer’s Australia made two submissions to this Inquiry spelling out the particular circumstances and needs of people affected by younger onset dementia. These submissions are available at http://www.fightdementia.org.au/research-publications/submissions-to-australian-government.aspx

While the Scheme as proposed may take up to 7 years to develop, if the Productivity Commission’s recommendations are fully implemented, many people affected by younger onset dementia will be eligible for assistance from the proposed Scheme in the future.

•Those with significant care and support needs may receive access to funded individualised supports if they have significantly reduced functioning in self-care, communication, mobility or self-management and require significant ongoing support or if their carers are under great strain and need some support.

•People with younger onset dementia may also be assisted as part of a proposed early intervention approach including for those with progressive neurological conditions.

The Government response to date

Following in the footsteps of Medicare, an NDIS will make sure Australians with disability have access to the services they need to participate in society, no matter where they live or how they acquired the disability. It will operate on insurance principles and give people with disability greater control and choice over the services they receive, for example through individualised funding.1

The Prime Minister very quickly released the Report on 10 August, endorsing the need for new arrangements and committing $10 million to the development work that would initially be necessary to support the development of a National Disability Insurance Scheme (NDIS). The funding will support a Ministerial Select Council on Disability Reform reporting to the Council of Australian Governments (COAG) as well as the necessary technical policy work needed to make disability services “NDIS-ready”, such as:•develop common assessment tools to determine eligibility

for support;•develop service and quality standards;•develop a national pricing structure;•build the capacity of the disability sector; and•build workforce capacity.

At the Select Council’s first meeting in October 2011, all Ministers agreed to lay the foundations for a National Disability Insurance Scheme by mid-2013 – a year ahead of the timetable set out by the Productivity Commission.

The following agreed principles will underpin the reform process:•That people with disability will be supported to participate in

and contribute to social and economic life to the extent of their abilities.

•That people with disability and their carers will have certainty and receive the individualised care and support they need over their lifetime.

•That the care and support needs of people with disability are met over their lifetime through an insurance approach, not the crisis-driven approach of the past.

•And that people with disability will be able to exercise more choice and control in their lives.

The Australian Government has invited all States and Territories to second skilled staff to the Agency that the Australian Government will establish to lead the Commonwealth’s work to design an NDIS.

Throughout 2012, the Australian Government is committed to working closely with State and Territory Governments, people with disability, their families and carers, service providers and the disability care and support workforce on the critical design and development work that is needed for a launch of the Scheme. This launch will occur initially in selected parts of Australia, with a complete rollout by 2018.

1Media Release available at http://www.jennymacklin.fahcsia.gov.au/mediareleases/2011/Pages/ndis_3dec11.aspx

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FrOm tHE cEOWhat impact will Disability Reform have on younger people affected by dementia?

In the short term, it seems probable little will change. There are some signs that dementia is better understood as a significant cause of disability in the 16,000 Australians under 65 who have dementia. Also that people with disability have an increased risk of dementia as they age, particularly those with Down syndrome. Dementia advocates feel more welcome within the ‘disability tent’.

In the longer term, younger people with dementia – and those who support them – have cause to be cautiously optimistic about the approach that the Productivity Commission has taken to disability reform in their completed Inquiry into Disability Care and Support (see previous article). Steps are being taken quickly to develop the structures and common approaches that will be needed if the Commission’s vision is to be realised.

Alzheimer’s Australia has advocated over many years for better access to age appropriate services that provide choice and meet individual needs. Traditionally people with dementia – including those under 65 – have been mainly supported within the aged care system. The decision by the Council of Australian Governments has made it clear that providing funding for care for younger people is to be the responsibility of the disability programs. This does not preclude aged care providers providing aged appropriate care – indeed it is my view that they should be encouraged to do so as they have the expertise in dementia care.

The challenge for all Governments now is to develop a robust and accessible system of support and care to replace the current system which is recognised as unfair, underfunded and fragmented. A key component will be helping people with a disability who are ageing and those who have younger onset dementia to access the care that they need from the sector best able to provide it, whether through disability or aged care services.

The Productivity Commission has shown unity in principle and purpose in the outcomes of their two recent Inquiries, in particular, a commitment to improved choice, access, quality, sustainability and greater consumer control. These principles were supported during our recent consumer consultations on the outcomes of the Care for Older Australians Inquiry. The additional difficulties experienced by younger people affected by dementia were raised at every venue across Australia.

The best outcomes for individuals will eventuate when the disability sector becomes a ‘dementia-friendly’ environment. This would mean:

•Developing expertise in supporting people affected by dementia through industry wide access to relevant training and education;

•Importantly, providing robust and timely assessment procedures which help younger people with dementia to get the information and services that they need soon after diagnosis;

•A healthy and constructive interface between various sectors, and particularly between the disability and aged care sectors so individuals have the best pathways and get timely access to the services that best meet their needs;

•Using the existing expertise and long-term experience of specialist agencies such as Alzheimer’s Australia and aged care service providers to continue to develop expertise in the disability sector as well as support individuals.

For now, Alzheimer’s Australia will continue our efforts to advocate for people affected by younger onset dementia. We will take action such as:

•Ask directly for increased funding for services that meet the needs of younger people through the Fight Dementia campaign;

•Support new approaches by aged care service providers to providing age-appropriate services like the HammondCare Horsley residential and respite service;

•Encourage politicians to visit services for younger people with dementia and listen to their issues and how these are being addressed;

•Make the case to State and Territory Disability Ministers about the real need to develop local arrangements that support people affected by younger onset dementia;

•Improve access to quality dementia services, including, but not limited to, projects managed by our Service Access Liaison Officers in Victoria, WA and the ACT;

•Continue to be an active advocate for younger people with dementia and the people who support them.

These are all small steps which increase the profile of younger onset dementia and will improve long term outcomes for individuals. Glenn Rees CEO

rEsEarcH PrOjEcts, nEws and BrEaktHrOugHs continued

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tHE dian PrOjEct - intErnatiOnal rEsEarcH intO Familial alzHEimEr’s disEasE

Alzheimer’s disease is the most common form of dementia, representing 50% of all dementia cases. The onset of Alzheimer’s can be sporadic or be related to a familial history. Inheriting the familial form of the disease is often linked to an autosomal dominant genetic mutation in one of the genes known to cause early onset Alzheimer’s disease. This type of genetic inheritance is extremely rare and represents only 1% of all Alzheimer’s cases. Most individuals with familial Alzheimer’s disease will experience an early onset of symptoms and have a 50% chance of passing the genetic mutation onto their children. It is hoped that a greater understanding of this disease will help not only people carrying the faulty genes but also others diagnosed with the much more common sporadic Alzheimer’s.

A recent international research initiative has been set up to study this unique group of people who are at risk of Alzheimer’s disease caused by a genetic mutation. The Dominantly Inherited Alzheimer’s Network (DIAN) is a research project that capitalizes

on existing international research partnerships and brings together researchers from Australia, United Kingdom and the USA.

With 10 sites around the world the DIAN study is aiming to recruit 400 eligible participants who are at risk of carrying one of these genetic mutations. Once recruited, participants will be involved in annual research assessments for up to 6 years. This will enable researchers to gain a longitudinal view of the progression of this disease.

The genetic form of familial Alzheimer’s is caused by an autosomal dominant mutation in one of 3 genes; the Presenilin 1 (PS1), Presenilin 2(PS2) or Amyloid precursor protein (APP) gene. The autosomal dominance of the mutation means that if a person carries a genetic mutation there is a 50% risk of them passing on the mutation to their children. Children that do not inherit the gene are at no greater risk of developing Alzheimer’s than people who develop the sporadic form of the disease. In genetic familial Alzheimer’s the progression of the disease usually has an early onset of symptoms, generally before 60 years of age.

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Professor Colin Masters, leader of the DIAN team in Melbourne

Dominantly Inherited Alzheimer’s, or DIA, is a VERY rare form of younger onset Alzheimer’s disease caused by genetic mutation. It is estimated there are only 20 to 30 family pedigrees who carry this type of gene in Australia! The rarity of this condition causes significant challenges in finding and recruiting participants to the study.

One common feature of DIA is that the condition has an early onset, generally before the age of 60. After reading about Alzheimer’s Australia’s work with people with younger onset dementia in a recent issue of our HOPE newsletter, the DIAN project team contacted Alzheimer’s Australia’s National Office to ask if we could help identify potential study participants. How best to do so than by publicising the study via HOPE?

rEsEarcHErs at tHE mEntal HEaltH rEsEarcH institutE at tHE univErsity OF mElBOurnE arE Part OF an intErnatiOnal rEsEarcH PrOjEct callEd dian, wHicH stands FOr dOminantly inHEritEd alzHEimEr's nEtwOrk.

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rEsEarcH PrOjEcts, nEws and BrEaktHrOugHs continued

DIAN endeavours to observe this population for any physical or cognitive changes that may help predict a person’s future development of Alzheimer’s disease. The research observes variables such as changes in protein levels or cognition that are often initially covert and small changes. Research participants undergo a series of assessments during the course of the DIAN study that are able to measure these small changes. Assessment undertaken includes a comprehensive clinical and physical assessment, brain scans, cerebrospinal fluid collection and blood tests. By looking at these factors over time, it is hoped that researchers will gain a better understanding of the disease process. Such information can help confirm a diagnosis at an early stage when treatment has its greatest opportunity to succeed.

Potential participants in the DIAN study do not need to know whether they carry a genetic mutation however they must be from a family known to have a mutation. DIAN researchers understand that the decision for a person to have a genetic test to find out if they have inherited a mutation is one that is never

australians dEsErvE tO agE wEll

taken lightly. There are dedicated counsellors who specialise in this area and provide support and information to the individual throughout the decision process and during testing itself. Any adult child of a parent carrying a mutation is able to participate in the DIAN study, but will not find out their genetic status by participating. The study can help participants find a genetic counsellor or doctor to discuss their options if they wish to pursue genetic testing.

It is anticipated that the improved understanding of the Alzheimer's disease process will result in better tests to detect Alzheimer's disease and eventually lead to therapies to treat or even prevent the illness. However, there can be no guarantees of success in these areas, and almost certainly not within the next few years.

If you would like further information about the Dominantly Inherited Alzheimer’s Network please contact Tabitha Nash at the Mental Health Research Institute, Victoria on (03) 8344 1859, or email [email protected], or see http://www.dian-info.org/.

We all know we have an ageing population - but what does this actually mean?

Well, by 2050 we will have three times as many people using aged care services than we do now - around 3.5 million. This also means an additional 500,000 workers will be required for this sector. Our aged care sector is already understaffed, with skill shortages and staff turnover issues.

Alzheimer's Australia is part of the National Aged Care Alliance (The Alliance). The Alliance is a representative body of 28 peak national organisations in aged care, including consumer groups, providers, unions, and health professionals, working together to determine a more positive future for aged care in Australia.

The Alliance's view on aged care is that Australia is not prepared for the coming growth in demand and that our current system is complicated, inconsistent and under pressure. And this doesn’t just affect older Australians

now – it will affect each and every one of us – and is of particular relevance to readers of this newsletter, people affected by younger onset dementia.

The Alliance released their Blueprint for Aged Care Reform, “Australians Deserve to Age Well- Preparing for Our Future Now” at a special breakfast event in Parliament House in Canberra on Thursday 9th February, 2012. The event was attended by politicians, senior public servants, media and representatives from across the aged care sector.

The Blueprint supports most of the recommendations of the report of Productivity Commission’s Inquiry into Caring for Older Australians, and sets out a timetable for their implementation.

Visit The Alliance website http://www.agewellcampaign.com.au/ for more information and to read the full Blueprint.

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carEr’s stOry

Obviously the answers to such questions will depend on various parameters such as the age of the person with dementia and the type of dementia they have, and can only be stated in probabilistic terms.

Hospitalisation

How do we manage major surgery for someone with dementia? In June 2009, Allison underwent a knee replacement, an operation involving major surgery. One neurologist advised us to avoid this surgery if at all possible, while another advised us to proceed. Apart from difficulties associated with the use of general anaesthetic, the issues this situation raised related to patients with dementia not knowing where they were, not knowing how to press a button if they needed assistance, managing self dosage of pain-killing drugs; knowing where the toilet was and knowing not to get out of bed with drips or catheters attached, and being able to answer questions from medical staff of the type “Have you ..... ever had high blood pressure/ever had an allergic reaction to any medicines.....etc?”

We decided that I would stay with Allison for the 18 days that covered both the surgery in hospital and time in a Rehabilitation Centre. In both places I was provided with a (very comfortable) cot and could obtain meals from a visitor’s menu. I set up a computer work station in the room so that I could continue my professional activities, and also an electronic organ to practise on. These arrangements worked extremely well, but I could not help wondering how dementia patients would cope in the absence of a carer or of special arrangements for permanent surveillance by hospital staff. Such surveillance processes should be feasible with current technology but are not generally implemented.

Dementia Facts & Fiction

As a carer, I am automatically regarded as an expert on Alzheimer’s disease by my numerous work and social contacts. As a result it would be useful if there existed a web-site that contained brief evaluations of the latest Alzheimer’s research that I could read regularly to keep my knowledge up to date. Another site that would be useful would be one that contained factual assessments of the various miracle “cures” that float outside mainstream research. Examples of these would include claims related to the effects of ginkgo, coconut oil and various vitamins. Carers need such facts to protect ourselves (and our sanity!) from the constant onslaught by well meaning friends who have heard about a so-called ‘miracle cure’ in the media or on the internet.

Organisations such as Alzheimer’s Australia are very effective at sorting out matters related to the logistics of action behalf of people with dementia; and Carers Australia are effective at developing strategies for coping with the interpersonal difficulties that arise between carers and their loved one with dementia. However there are still gaps that exist which cause difficulties. Here are some that my wife and I have experienced.

Length of Time it Took to get a Diagnosis of Dementia

I first took my wife Allison, who was then aged 64 years, to the Kingston CDAMS (Cognitive, Dementia and Memory Service) not far from our home in Melbourne, for an assessment in September 2003. However, she was not officially diagnosed with Alzheimer’s disease until her fourth annual examination three years later in December 2006. At the conclusion of my first meeting I asked what would happen to Allison if she was diagnosed with Alzheimer’s. The response was something like, “You don’t want to know. Enjoy life while you can”.

But of course I did want to know. In the first place, it would be useful for carers to know that once officially diagnosed, the person they love and care for will be hit by a whole bunch of negatives such as curtailment of driving privileges, difficulty obtaining travel insurance and reduced job opportunities. Further it should be stated quite clearly from the start, that currently Alzheimer’s disease is not curable and that the person’s condition can only get progressively worse as time goes on.

What Symptoms Are Likely To Appear And When?

More important however is to know the list of severe symptoms that may occur as the dementia progresses. I was quite surprised to learn that two of my friends had lost their speech faculties. What other surprises were in store for Allison and I?

There is also a need to learn about the “break-point”, that terrible moment when a carer decides that it is time for a separation and that their partner will need to be placed in a nursing home. Case study descriptions of break-points of Younger Onset couples would help both carers and people with dementia to prepare themselves mentally for the arrival of this traumatic event.

What would be very useful for planning and personal purposes is to have a list of key milestones in the progress of the various common types of symptoms and the time it might take for these to develop. For example, how long will it be before:•a person cannot remember what happened the previous day;•does not recognise their partner;•death occurs?

Bob Leicester and his wife Allison

mEdi-carErby Bob Leicester, Victoria

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Research

Finally I would like to make a suggestion that dementia researchers make better use of the potential contributions by carers. Both Allison and I have each now taken part in four Alzheimer’s related research projects. In the course of doing these, I am constantly amazed at the crudity of the assessments of the progress of the disease. Much finer assessments of the progress of the disease could be made by recruiting the assistance of carers. For example carers could be asked to record, on a daily basis, the number of times the person in their care asked the same question during the first hour after their daily awakening. This information could be used to track changes that occur in the progression of the disease that are too fine to be picked up by the usual tests.

Early Signs

If the above is successful, then an extension would be to use similar types of records for persons not yet diagnosed with dementia, but whose partner or family members may have picked up changes in behaviour, mood swings. If a sufficiently large number of volunteers could be recruited to keep records of such simple parameters, then eventually some of these persons will develop Alzheimer’s disease and the records kept could be used to develop a non-invasive method of tracking the precursors of Alzheimer’s as defined by today’s conventional testing. It could work. After all, I had managed to pick up abnormalities in Allison’s behaviour and thoughts three years before they triggered a response from conventional tests.

I hope that the preceding discussion will help others facing similar issues, and help researchers and service providers in developing their projects and programs.

Editor’s Note:

I would like to thank Bob Leicester for writing this article for HOPE. No doubt many readers will relate to the situations Allison and Bob have faced and we do hear similar things from people who say “I wish I’d known....”. They tell us they wish they’d known about things like early warning signs, delays in diagnosis, how to deal with hospital stays and what to expect as the disease progresses.

Alzheimer’s Australia offers information, advice and support on the sort of issues Bob has written about. Additionally, we continuously update, improve and expand our services and information resources, in response to questions and feedback from people with dementia, their carers and family members, community groups, health and aged care professionals and other service providers.

The primary entry point for people with dementia, carers, family members, and others is the National Dementia Helpline – 1800 100 500. When you call this number, you will speak to a trained and experienced Alzheimer’s Australia representative in your state or territory. They can not only answer your questions about dementia, they can also offer specialised, professional and individualised counselling and referral to local support programs offered by Alzheimer’s Australia and other service providers.

If you have access to the internet, the best place to start is Alzheimer’s Australia’s homepage www.fightdementia.org.au (see picture next page).

Using the five main tabs, you can navigate to information and resources on a wide range of subjects, including information that will help to answer the type of questions Bob’s article raises.

For example, in the Understanding Dementia and Memory Loss section, (http://www.fightdementia.org.au/understanding-dementia-and-memory-loss.aspx) you’ll find Help Sheets and Tip Sheets covering a wide range of topics – from changed behaviours to looking after carers; from working with doctors and going to hospital and dealing with the later stages of dementia.

The Research and Publications section will keep you informed about current national and international dementia research including into causes, treatment and cures, better ways to diagnose and dementia care.

To go straight to our webpage specifically for Younger Onset Dementia use this link, www.fightdementia.org.au/services/younger-onset-dementia.aspx

carEr’s stOry continued

HOPE Newsletter 11

In addition to the HOPE Newsletter, Alzheimer’s Australia publishes a range of other newsletters for various audiences. For example, our national, twice-monthly Dementia News contains information and analysis of current media articles on dementia research. This is published on our website as well as sent via email to consumers and professionals working or dealing with dementia.

And of course, Alzheimer’s Australia organises support groups, activities and courses in every state and territory. Please refer to the Upcoming Events page of this newsletter for a selection of events relevant to people with younger onset dementia, their carers and family and for professionals working with people affected by younger onset dementia. For information on all events in your area, please call the National Dementia Helpline on 1800 100 500 or refer to your state or territory page on our website.

By publishing Bob’s article outlining his and Allison’s experiences, questions, learnings and suggestions, and by providing the above references to resources which are designed to help solve the types of problems Allison and Bob faced, I too hope that this article will help others who are facing similar issues.

Jenny Warren

alzHEimEr’s australia wEBsitE www.FigHtdEmEntia.Org.au

tHE FivE main taBs, sHOwing undErstanding dEmEntia and mEmOry lOss

HOPE Newsletter12

uPcOming EvEntsalzHEimEr’s australia statE and tErritOry EvEnts

natiOnal Dementia Awareness Week - September 21st to 28th, 2012

This year’s program will include a series of public lectures in a number of capital cities across Australia by Dr Serge Gauthier, Director, Alzheimer’s Disease Research Unit, McGill Center1 for Studies in Aging2, Canada. Dates, times and venues to be announced later in the year.

Local activities and events will also be announced throughout the year. For more information on how you can get involved, contact your local Alzheimer’s Australia office via the National Dementia Helpline, 1800 100 500.

wEstErn australiaResidential Respite Pilot Program for Younger People with Dementia

When Monday 19th March to Monday 26th March, 2012

Where Hakea Respite Facility, Hillview Terrace, Bentley

Cost Please enquire

Enquiries & Registration Of Interest: Hannah Le Cras, (08) 9388 2800

YOD Friendship Club

When Every 2nd Wednesday* 9:30am - 2:30pm *7th March, 21st March, 4th April, 18th April, 2nd May, 16th May, 30th May, etc

Where Suite 9, Lotteries House, 80 Civic Boulevarde, Rockingham

Cost $8 plus spending money

Enquiries & Registration Of Interest: Barry Garnham, (08) 9535 8772

The Saturday Club

When Every Saturday 10:00am – 3:00pm

Where Mary Chester Centre, 9 Bedbrook Place, Shenton Park

Cost $8 plus spending money

Enquiries & Registration Of Interest: Marlene Grogan, (08) 9388 2800

Education workshop for health professionals

Younger Onset Dementia – this course is for care staff who interact with younger people (under 65) diagnosed with dementia. Participants will gain an understanding of the unique needs of younger people with dementia and will explore ways to adapt their care and service provision.

When Thursday 17th May, 2012 9:00am - 12:00pm

Where Alzheimer’s Australia WA, 9 Bedbrook Place, Shenton Park

Cost $77

Enquiries & Registration Of Interest: Alzheimer’s Australia WA, (08) 9388 2800

act Dementia Network Forum, The Younger Person with Dementia and their Carers. Organised by Alzheimer’s Australia ACT.

When Wednesday 20th June, 2012 12:45 – 4:30 pm

Where Canberra Southern Cross Club, Woden

Cost Alzheimer’s Australia ACT members $30, non-members $35

Enquiries & Bookings: Alzheimer’s Australia ACT, (02) 6255 0722

Alzheimer’s Australia organises events, courses and support groups for people with dementia and their family, carers and professionals working in dementia care and support roles. Events are run in all states and territories, in all capital cities and many regional centres.

For information on upcoming events near you, go to Alzheimer’s Australia’s website www.fightdementia.org.au, click on ‘Choose your state’, then select your state or territory from the list.

Here’s a selection of upcoming events that may be of interest to readers of HOPE.

1, 2 North American spelling

HOPE Newsletter 13

victOria Alzheimer’s Australia Vic is launching a café style support program for people living with Younger Onset Dementia and their family members and friends. The events will be held at our Hawthorn office and will reflect the needs of the Younger Onset Dementia core group. The cafés are a fantastic place to meet other people, share experiences, offer each other support and receive resources and information relating to Younger Onset Dementia.

When Upcoming Dates: Friday 23rd March, 2012 12:00 – 3:00pm Wednesday 18th April, 2012 5:00 – 8:00pm Thursday 24th May, 2012 4:00 – 7:00pm Sunday 1st July, 2012 12:00 – 3:00pm

Where Alzheimer’s Australia Victoria 98-104 Riversdale Rd, Hawthorn

Cost Free

For further information please contact Belinda Nixon on (03) 9815 7800.

The Younger Onset Dementia Café is proudly supported by the Wood Family Foundation.

Education workshop for health professionals Younger Onset Dementia – this course is for Professionals who already have some knowledge of dementia and is designed to help participants understand the impact of dementia on the younger person and their family as well as their distinctive needs.

When Tuesday 29th May, 2012 9:30am - 12:30pm

Where Alzheimer’s Australia Victoria, 98-104 Riversdale Rd, Hawthorn

Cost Free

Enquiries & Registration Of Interest: Alzheimer’s Australia Vic, (03) 9815 7808 or [email protected]

The Age Run Melbourne Now is the time to get the trainers out and start preparing for “THE AGE Run Melbourne” 2012 fitness event.

The annual event is a great opportunity to get fit and help raise funds for our charity. At last year’s event, 80 people walked & jogged for Alzheimer’s Australia Victoria. Donations and sponsorships from their families, friends and colleagues raised over $18,000! Our participants included a 4 year old boy who had lost his beloved grandfather to dementia.

There’s a half marathon, a 10km run, a 5km run/walk and a 3km off-road kids run on the banks of the Yarra River.

When Sunday 15th July, 2012 (half marathon, 10km & 5km Saturday 14th July, 2012 (Kids run)

Where Melbourne CBD

Registration, Event Information And Sponsorship: www.runmelbourne.com.au

For more information about donations and sponsorship for Alzheimer’s Australia, call the Fundraising Team at Alzhemier’s Australia Victoria on (03) 9815 7800.

nsw Sydney Memory Walk and Memory Jog 2012

When Sunday 6th May, 2012

Where The Bay Run, commencing from Leichhardt Oval no 3, Maliyawul St, Lilyfield

Enquiries & Registration Of Interest: Alzheimer’s Australia NSW, (02) 9805 0100 or [email protected]

sOutH australiaPeople living with Younger Onset dementia in metropolitan Adelaide and Adelaide Hills areas may contact the Connexus Program Coordinator for younger onset supports and social activities via the National Dementia Helpline (Freecall 1800 100 500), or Alzheimers Australia South Australia on (08) 8372 2100.

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uPcOming EvEnts continued

HOPE Newsletter14

making liFE EasiEr alzHEimEr’s australia’s yOungEr OnsEt dEmEntia FrEE tiP sHEEts

You might not be aware of Alzheimer’s Australia’s free Tip Sheets, specifically written for people living with younger onset dementia, family and friends.

The 15 Tip Sheets provide simple ideas to assist in the support of people under the age of 65 years and their families and carers. The sheets draw on the combined experience of clinicians, Alzheimer's Australia professionals, people living with dementia and carers.

Access the Tip Sheets via the Alzheimer’s Australia website Home Page or the link below, or call the National Dementia Helpline on 1800 100 500 to ask for Tip Sheets to be mailed to you. Link: http://www.fightdementia.org.au/services/tip-sheets.aspx

YOD Tip Sheet No Tip Sheet Topic

1 Legal and Financial Issues

2 Decision Making Capacity - who decides?

3 Managing the Impact of Change

4 Problem Solving

5 Structure and Routine

6 Personality and Behaviours

7 Strengths

8 Concentration and Attention

9 Memory

10 Using a Diary to Enhance Memory

11 Language and Communication

12 Visual Information

13 Changed Behaviours

14 Employment

15 Other Factors

cOntact numBErs natiOnal dEmEntia HElPlinE 1800 100 500

alzHEimEr’s australia 1800 100 500 Or www.FigHtdEmEntia.Org.au

dEmEntia BEHaviOur managEmEnt advisOry sErvicE (dBmas) 1800 699 799

cOmmOnwEaltH rEsPitE and carElink cEntrE 1800 052 222

EmErgEncy rEsPitE (aFtEr HOurs) 1800 059 059