The quarterly newsletter of Alzheimer’s Australia WA ...

MILESTONESThe quarterly newsletter of Alzheimer’s Australia WA

ISSuE 14 SPRING 2012

CELEBRATING OuR STORY PAGE 6

ChANGES TO ThE PhARMACEuTICAL BENEfITS SChEMEPAGE 5

2 Milestones Spring 2012

ChAIRMAN’S MESSAGE

ThE COMMONwEALTh GOvERNMENT RECENTLY ANNOuNCEd A dECISION BY ThE AuSTRALIAN hEALTh MINISTER’S AdvISORY COMMITTEE TO MAkE dEMENTIA A NATIONAL hEALTh PRIORITY AREA, ALONGSIdE EIGhT OThER ChRONIC dISEASES INCLudING CANCER ANd hEART dISEASE.

This is a victory worth celebrating for Alzheimer’s Australia. This announcement demonstrates that our collective voice has been heard by the government. It’s truly a testament to the awareness we have raised as an organisation on behalf of all those touched by dementia.

Although we can never rest on our laurels, especially at a time when we face a national dementia epidemic, we can reflect back on all that we have achieved and feel a true sense of accomplishment.

AN hISTORIC dECISIONI believe we can be proud that Australia is taking the lead internationally in giving dementia the priority it deserves in health and aged care policy, and we congratulate and thank the Commonwealth Government for making such a monumental decision.

We must also applaud the efforts of WA’s Health Minister, Dr Kim Hames, for his contribution to bringing about this change. The agreement reached by the Commonwealth and state governments means we can now address dementia across both the health and aged care systems.

The announcement, coupled with the Commonwealth Government’s commitment of $268.4 million over five years to tackle dementia as part of the Living Longer, Living Better aged care reform package, creates new opportunities to address areas that have long been neglected.

whY IT’S IMPORTANTHaving dementia recognised as a National Health Priority is of enormous importance for three reasons.

1. For the first time in Australian Health Policy, dementia has been recognised as a chronic disease and not simply an aged care issue.

2. The decision sets the scene for a new national action plan on dementia to be agreed by Australian Health Ministers.

3. Making dementia a health priority is the starting point for the Commonwealth Government to tackle dementia.

fAREwELL fRANkIn very different, but similarly important news, in September, we will say goodbye to Alzheimer’s Australia WA’s long serving CEO Frank Schaper.

Frank has been at the helm of our organisation for more than 15 years and has been instrumental in its sustainability and growth, in addition to the raising of awareness for dementia in the WA community.

On behalf of everyone at Alzheimer’s Australia WA, I would like to congratulate Frank on his success, wish him well in his retirement and express our deep gratitude for his leadership in guiding the organisation through both challenging times and exciting moments.

Frank’s vision in tackling the dementia epidemic in WA is unparalleled and many people have benefited from his drive, professionalism and insight into making WA a better place for people living with dementia.

With the assistance of Briscoe Search & Solutions, we are working on recruiting a new CEO, whom we hope to appoint in the final quarter of the year. We look forward to bringing you further updates on this and I am confidant that we will find an exceptional individual who can help drive the organisation into the future.

NATIONAL dEMENTIA AwARENESS wEEkSeptember 21-28This year, Director of the Alzheimer’s Disease Research Unit at Canada’s McGill University, Dr Serge Gauthier, will present

a public lecture discussing the possible causes, prospects of new treatment and links between dementia and other chronic diseases.

Brain Health – Making the Connections will also explore the potential of including dementia in existing health prevention programs, slowing the progression of the disease and reducing its prevalence.

Dr Serge Gauthier’s lecture will take place at 6pm on September 25 at Challenge Stadium, Mt Claremont. To register visit www.fightdementia.org.au/wa or call 08 9388 2800.

MEMORY wALk On Sunday October 21, please join us at Edinburgh Oval, Curtin University, as we come together as a community to walk against dementia, to pay tribute to those touched by dementia and to remember loved ones we have lost.

The special day takes place from 10am and I’m wholeheartedly encouraging the WA community to support this fantastic event.

After every lap, participants will receive a Memory Flag to write your own messages of love, remembrance or support. For those of you for whom location or circumstance precludes you from participation, I encourage you to complete the flag insert enclosed in this edition of our Milestones magazine and return it to us, so that we may plant it on Edinburgh Oval on your behalf.

Register at www.memorywalkwa.com.au or call 08 9388 2800.

In closing, I hope you find this issue of Milestones an interesting and informative read and thank you once again for your wonderful support of our organisation.

Craig Masarei Chairman Alzheimer’s Australia WA

Alzheimer’s Australia WA 3

ART ThERAPYRon Madin and his grandson Joseph are proudly featured on the cover page of this edition of Milestones.

Ron and his wife Ann have been regular participants of Alzheimer’s Australia WA Artistic Adventures art program, run in conjunction with the Art Gallery of WA. This exciting and innovative program is held at the Art Gallery of WA, where couples can enjoy two sessions a month - a guided gallery tour and a hands on studio session.

For information about the program, please contact Art Therapist Jackie Lewis on 9388 2800 or email [email protected]

BRAIN hEALThMAkING ThE CONNECTIONS

ABOuT ThE SPEAkERDr Serge Gauthier is Director of the Alzheimer’s Disease Research Unit at the McGill Centre for Studies in Aging, McGill University and a Professor at the university’s Neurology and Neurosurgery, Psychiatry and Medicine departments. His interests include a consensus approach to the management of dementia in different stages and primary prevention strategies against cognitive decline and dementia. He was a recipient of the Prix Galien Award in 1997 and has written and co-authored nearly 500 research articles.

Artistic Adventures art program participants.

GuEST SPEAkERdR SERGE GAuThIER Md, fRCPC Alzheimer’s Australia WA invites you to a public lecture by one of Canada’s leading experts in neurology and aged care.

Topics covered include:• Possible causes of dementia and the prospects of

new treatments;• Links between dementia and other chronic diseases

and their management;• The evidence base for reducing the risk of dementia;• The potential to include dementia in existing health

prevention programs; and• Slowing the progression of the disease and reducing

prevalence of dementia.

Date: Tuesday 25 September 2012Time: 6.00pm to 7.30pm, Light refreshments from 5.30pmVenue: Challenge Stadium Lecture Theatre

100 Stephenson Avenue, Mt Claremont. Cost: Members $11, Non-members $22.Register: www.fightdementia.org.au/wa or call Julia Staunton

on (08) 6271 1023 (office hours).

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Dementia leads to a profound deficit in memory, which relates directly to incontinence. The brain sends messages downstream to the bladder and bowel controlling muscles responsible for release of their contents. In turn the bladder and bowel send information up to the brain letting it know when release is necessary. In the case of dementia, understanding these messages arriving at the brain and more importantly, how to execute the appropriate functions, may be severely disabled due to memory loss. Ultimately, the changes in the brain accompanying dementia interfere with any of a number of critical steps we likely learnt as children: the ability to recognise the need to go to the toilet; to wait until it is socially acceptable to go to the toilet; to find and recognise the toilet; and to appropriately use the toilet.

The person whose dementia is coupled with incontinence presents with greater challenges than those relating to hygiene or inconvenience alone. Being dependent on another—a carer, a child, a spouse—for assistance with the basic activities of daily living can be very difficult to accept and acknowledge. Indeed, adding these concerns to the burdens already carried by a person living with dementia can lead to even greater distress. There may be feelings of embarrassment manifested as aggression towards carers or family

members. For these reasons it is vital for carers of people with dementia to understand the distress which may accompany a condition such as incontinence and to also seek professional help at an early stage ensuring the carer does not struggle alone.

There are many other causes of incontinence and most of these are treatable. And like the wider community to which they belong, people with dementia are susceptible to these too. Consequently, consulting with a doctor for assessment of any degree of incontinence is strongly recommended.

Regardless of the cause, the following ideas can help carers reduce the frequency of accidents.

• Maintain dignity and minimize embarrassment when accidents occur

• Remain calm and reassuring• Remind the person that they may

need to go to the bathroom• Assist the person to the bathroom on

a regular basis• Do not restrict fluid to avoid

incontinence as it could lead to dehydration

• Use short and simple words to give step-by-step instructions, for example, ‘sit down’

• Watch for non-verbal cues such as pulling at clothes or agitation

• Use words that are familiar to the person such as ‘pee’ or ‘tinkle’

• Do not rush• Have a clear well signed bathroom

and toilet facility, signage in yellow that stands out and is easy to see

• Consider changing the colour of the toilet seat, a black seat and a white pan can make it easier to see. People with dementia may experience orientation difficulties if the bathroom facilities are all the same colour

• Make sure clothing worn can be quickly unfastened and removed, for example Velcro in the place of zips and buttons

A number of resources including free continence product samples, information on government schemes and subsidies and access to education seminars can be accessed by visiting www.dependprofessional.com.au or by calling Kimberly-Clarke’s toll free hotline on 1800 101 021.

Elements of this article have been adapted from the Better Health Channel www.betterhealth.vic.gov.au

dEMENTIA ANd INCONTINENCE

IMAGINE LOSING YOuR ABILITY TO CONTROL whEN OR whERE YOu uRINATE. fACEd BY 4.8 MILLION AuSTRALIANS, INCONTINENCE – A TERM uSEd TO dESCRIBE ThE INvOLuNTARY LOSS Of uRINE fROM ThE BLAddER OR fAECAL MATTER fROM ThE BOwEL – IS A CONdITION wORTh uNdERSTANdING.

It affects all ages and is one of the biggest health issues in the Australian community. Thousands of Australians receive a diagnosis of bladder or bowel control issues each year owing to a variety of causes. It is an unspoken and distressing condition that, if left untreated or mismanaged, can greatly impair one’s quality of life.

ALzhEIMER’S AuSTRALIA hAS CALLEd fOR ThE ExPANSION RAThER ThAN ThE RESTRICTION Of ThE PBS.

A 2010-2011 review by the Pharmaceutical Benefits Advisory Committee (PBAC) found CEI medicines were being prescribed to a much larger population for longer periods of time than was originally agreed as cost-effective, prompting the PBAC to begin a review of the listed anti-dementia drugs.

Alzheimer’s Australia made a submission to the review calling for the expansion rather than restriction of the PBS, arguing that treating doctors and specialists should determine whether the medication was making a difference, based on their clinical judgement and expertise.

Alzheimer’s Australia CEO Glen Rees said the PBAC’s out-of-date and excessively complex rules for access to anti-dementia medicines meant many Australians who stood to benefit from these drugs were unable to access them.

“Only a small proportion of people living with Alzheimer’s disease get access to these medications. The current rules are restrictive and not cost-effective when you take into account the time taken by specialists and consumers that have to jump through hoops to get access to this much-needed medication.

“Many consumers who experience a significant benefit from these medications do not meet the strict criteria for continuation. As a result, large numbers of consumers are paying for these medications out of their own pocket.”

Alzheimer’s Australia has received many messages of concern from people with dementia and their family carers about the possibility their access to these medications will be terminated.

“We are hearing that these medications play a significant role in helping people with dementia and their carers to achieve the best quality of life they can as they deal with a terminal condition,” Mr Rees said.

“There is evidence that these medications can delay entry to nursing homes and relieve stress on family carers.

“Our concern is that this review might make it even more difficult for people to access these medications.”

Mr Rees said there were other ways to contain medication costs associated with dementia.

“There is evidence that antipsychotic medications are inappropriately prescribed to people with dementia before other treatments have been tried,” said Mr Rees.

“Antipsychotic medications carry significant side-effects including increased risk of stroke and death.

“The government spends $20 million each year subsidising the medications for people with dementia.

“Improving medication management would be a far better way to improve cost-effectiveness than restricting access to the few medications which we know people value.”

It is with a tinge of sadness that I will be leaving the organisation as its Chief Executive Officer on Friday September 28th 2012. After nearly 16 years in the job, it’s time to hand over the reigns to someone else who can lift the organisation to a new level and who can provide the leadership needed to take the cause to its next stage. At 71 years of age I feel I have achieved all I can, but I say that with some pride and a sense that as an organisation there is much we can celebrate.

I am confident that with a strong Board and its leadership the organisation is in good hands and I am not at all concerned about its future. Collectively with the senior management team they have a good understanding of the organisation and its priorities.

There is very little that I regret and perhaps the only one worth mentioning is the fact that I will not be there to see the new building at Curtin University rise out of the ground as a beacon for the future direction of Alzheimer’s Australia WA.

I will watch with great interest how the organisation will continue to demand attention for the many people that live with dementia and for whom Alzheimer’s Australia WA was established. Finally I want to pay tribute to the rich talent that resides in the staff and volunteers of Alzheimer’s Australia WA, they are the real force behind its achievements. To them belong the accolades and I pay them tribute for their passion and commitment. I shall miss them as my journey in life takes a different path.

Frank J SchaperChief Executive Officer


ChANGES TO ThE PhARMACEuTICAL BENEfITS SChEME

The pharmaceutical benefits scheme (PBS) is part of the Australian Government’s National Medicines Policy which subsidises the costs of medicine for most medical conditions, including cholinesterase inhibitor (CEI) medicines used to treat Alzheimer’s disease.

fRANk’S PARTINGwORdS

CELEBRATING OuR STORY


NEw SERvICESIn 2006, a project began to investigate whether the i-kids GPS phone could be adapted for use with people with dementia. After two years of development, Safe2Walk was launched, an immensely successful program in the process of being adopted by other states. It was instrumental in the swift rescue of a missing person with dementia in 2010.

The Australian Government made dementia a national health priority in the 2005 budget, launching the Dementia Initiative. One of the Initiative’s programs was The Dementia Behavioural Management Advisory Service. In 2006, AAWA was successful in their tender to secure and provide this program in WA, and to this day continues to be the providers of this service.

NEw EvENTSIn September 2009, Alzheimer’s Australia WA held its inaugural Memory Walk At Edinburgh Oval at Curtin University, which was the organisation’s single biggest fundraising and awareness raising event at the time. Participants were invited to attend, fundraise, and for every lap walked, they would receive a flag upon which to write a message of love, remembrance or support.

More than 400 people attended, more than 4000 flags were planted and more than $72,000 was raised from the 2009 event. Since then, the annual Walk has continued to grow every year and remains the highlight of the organisation’s fundraising calendar.

ChANGING ROLESA report commissioned by Alzheimer’s Australia and published by Access Economics in 2008, The Dementia epidemic: Economics Impact and Positive Solutions for Australia, revealed a massive and sustained growth in the number of people with dementia driven by the

OuR SERIES TO hIGhLIGhT EACh dECAdE Of ALzhEIMER’S AuSTRALIA wA’S 30-YEAR JOuRNEY CONTINuES. ThIS ISSuE wE LOOk AT ThE ORGANISATION’S JOuRNEY fROM 2002 TO 2012.

Lynne Hedley at DBMAS launch 2007.

In the 20 years since Alzheimer’s Australia WA began, it had grown from a handful of dedicated volunteers working out of a borrowed office to a professionally run medium-sized organisation with a home in Shenton Park. Along the way it, underwent numerous changes including a reorganisation and rebranding to reflect its growth.

As the organisation entered its third decade, it continued to expand, both in size and in the roles and services it provided, keeping pace with the explosion in demand and the advances in technology.

When Rose McKenney went missing in 2009 after her Sunday walk, the police were able to swiftly locate her thanks to her Safe2Walk GPS device. Even though it was turned off, Alzheimer’s Australia WA’s staff were able to remotely activate it and obtain a location, allowing First Class Constable Stephen Ryan to find her.

ageing population. After careful review, it was decided it was not possible for the organisation’s support and respite services to grow to meet demand.

Instead, a decision was made to shift in focus from service provision to capacity building, with the existing services to be maintained at an optimum level for research and testing new care models. The organisation would continue to research the best care models, but focus on sharing and teaching other aged care organisations to influence and increase care capacity on a broader level.

A joint partnership with Curtin University was also announced, with a Centre of Excellence in Dementia care to be built upon the University’s Bentley campus by 2015. It was an unprecedented project, with collaborations between the Curtin Health Innovation Research Institution and close access to the science and health faculties expected to inform and influence generations of graduating students on dementia care.

An office in Selby Street, Wembley was leased in 2006 to ease the space issues at Shenton Park, an arrangement that continues to this day.

REGIONSA decision was made in 2000 to branch out into the regional areas of WA, where the organisation was limited to counselling and education and lacked a direct-care service.

The Kalgoorlie, Albany and York regional teams originally started out as Mobile Dementia Respite Teams (MDRT), able to provide respite where it was needed in regional locations. Despite the emphasis on mobility, it quickly became evident the teams needed to be based from a regional location.

Peta Douglas, one of the first Kalgoorlie MDRT coordinators, recalls CEO Frank Schaper asking if she had any reservations working in a shared office.

“I misheard it as a ‘shed’ office, but since I was practically working out of my car at the time – I kept the typewriter in the boot – I jumped at the chance anyway,” said Peta.

Each branch faced unique challenges as they grew. The vast distances involved meant long travel times were a regular phenomenon and finding carers for the remote locations was a perennial struggle. Commonwealth funding was limited and necessity was often the mother of invention. Accommodation was seldom ideal and often required an immense amount of work, as was the case for Hawthorn House in Albany.

Marlene Grogan, who worked with the Albany MDRT, recalls dragging her family along and spending many late nights and weekends at Hawthorn House to work on it because it was so run down.

“We were given a $10 000 grant from the Commonwealth Government to furnish the house, but after purchasing the basic essentials such as fridge, washing machine, beds, dining room suite, lounge chairs and new linen, there really wasn’t much left,” said Marlene.

“We had to rely on donations from the St Vincent De Paul Society.”

“Initially Hawthorn House was only funded to provide respite from the house every second weekend. As soon as the next funding round was announced we applied for Centre Based Respite from Monday - Thursday.”

With the application’s success came the need for manpower to run the house. The volunteer program ‘Friends of Hawthorn House’ was created to recognize the contributions of the volunteers in Albany and continues today.

Alzheimer’s Australia WA’s greatest asset has always been its people and the success of the regional services despite these challenges was a testament to the organisation and its people.


Hawthorn House from the outside.

Participants at the first Memory Walk in 2009.

Next issue: The future looks bright


wILL YOu TEE Off fOR dEMENTIA?ChARITY GOLf dAY

Hill View Golf Course, Maida ValeFriday Oct 19th 2012

$80 per player inc dinner

Call Noel on 08 9454 7738 to register.

Alzheimer’s Australia WA is grateful for the support of the staff & customers of the Forrestfield and High Wycombe Community Bank Branch.

Help to raise awareness, pay tribute to loved ones and show your support to all those who are living with dementia.Register today www.memorywalkwa.com.au or call 9388 2800.

JOIN ALzhEIMER’S AuSTRALIA wA ANd ThE PERTh COMMuNITY AS wE COME TOGEThER TO wALk AGAINST dEMENTIA.

SuNdAY 21 OCTOBER10AM TO 3PM EdINBuRGh OvAL, CuRTIN uNIvERSITY

Mary Chester Centre and Men’s Shed club member Gordon Lawson presenting Knorr-Bremse Account Manager Daniel Valentine with a certificate of thanks.

Knorr-Bremse technician John Semmens, Men’s Shed facilitator Carl Benson, and Account Manager Daniel Valentine with $1000 worth of tools.

On 27 July 2012, Knorr-Bremse Australia presented Alzheimer’s Australia WA with a generous donation of $1000 worth of power tools.

The gift was for the Men’s Shed program at the Mary Chester centre, a woodwork program for male club members with dementia.

Knorr-Bremse Key Account Manager Daniel Valentine said it was a worthwhile cause and one they were happy to contribute to.

“There were a few people in the office who had been personally affected by the disease,” said Daniel.

“When I heard about their request for tools, I told Marlene to send me the list, and we’d see what we could manage.“

Marlene Grogan, the centre’s coordinator, said the tools were a welcome addition to the Men’s Shed.

“It’s an amazing gift, far more than what we had hoped for!” said Marlene.

“A lot of respite centre activity is aimed towards women. The MCC stands out with Men’s shed and it’s focus on men as well. These tools will be put to good use.”

TOOLS fOR ThE ShEd

All through human history we have this tendency to look back to the safe havens of the past. The “if only” things had continued as they were turn our gaze to a time that has gone; to things that now only exist in our memories.

I am amazed when I hear people say with a nostalgic tone in their voice, “If only they made cars like they used to” – regular oil changes; a full service before you ever went on a trip; regular breakdowns; multitudinous punctures. The past is often little more than a figment of our imagination.

If we are to live, rather than just exist, we need to accept the realities of the present. Enjoy the good memories of the past, yes, but then get on with responding to the present with all its variety of experiences.

In our journey through grief we go through the process of breaking the ties that bind us. This can be a painful process but eventually it is the way to freedom

1. Expectations can tie us to the past.The unfulfilled dreams and promises claim our attention. We had expected the future to present us with all that we had dreamed and hoped for, but instead those dreams are shipwrecked on the rocks of disease or death. The person that was the centre of the promises is no longer present. Intellectually or physically they have gone and without them the expectations of the past have no meaning. If we try to hang onto those dreams and promises we will be tied to the past (for that is where they are) and will not have the freedom to live in the present.

2. Regrets can tie us to the past.Lamenting unfulfilled dreams and promises can sap our energy and leave us feeling as though we are prisoners never again to enjoy freedom. Life becomes a dark cell in which the shutters of regret block out all light. We need to acknowledge what we have lost and refuse to hold on to ties that would bind.

3. Resentment can tie us to the past.The “if onlys” can very quickly shift to resentment. Anger rises and as we dwell on it quickly it dominates us with a bitterness that breaks our spirit, ruins our relationships and steals our hope. We start to live in a world that “used to be” rather than in the world that is.

4. Responsibility can tie us to the past.An overwhelming sense of duty or guilt can be strong bonds that hold us so strongly that we are not able to admit when we need help. Sometimes the strongest expression of love can be seen in a willingness to let go “what used to be” and to accept the truth of “what is.” That might mean that we redefine our responsibilities to meet the needs of the present rather than being tied to the past.

Loss can produce a mass of ties that bind us to the past. Grief is the process that loosens those bonds to enable us to live in freedom.


ThE TIES ThAT BINd

IT IS vERY dIffICuLT TO LIvE IN ThE PRESENT OR dREAM fOR ThE fuTuRE whEN ALL wE dESIRE SEEMS TO BE IN ThE PAST.

The last article I wrote spoke of the surprises of grief. Another of its surprises is its power to imprison us in the past. It seems that there are so many ties that bind us and stop us moving ahead with life.

ALLAN ANdERSONGrief and Loss Educator at Chipper Funerals

ACSwA AwARdSAlzheimer’s Australia WA was delighted to be nominated as a finalist in the organisation category of the 2012 ACSWA Excellence in Care Awards.

The award ceremony and dinner on 8 June was attended by Alzheimer’s Australia WA CEO Frank Schaper, Vice-Chairman Jenny Rogers, and Board Members Jenny Watt and Andrew Hogan. A small number of staff also represented the organisation at this prestigious event.

Alzheimer’s Australia WA at the ACSWA Awards.


From Bunbury to Kalgoorlie and everywhere in between, from morning teas to glittering dinners, your efforts were greatly appreciated.

The response was so overwhelmingly enthusiastic that the campaign has been extended past its original conclusion date of 30 June.

Congratulations to Jean Shine of Brunswick Junction, whose Dine4Dementia event raised $1700, making her the highest fundraiser.

We would like to gratefully acknowledge the support of our sponsors: Catalano Seafoods, Stormbox and Saracen Estates. We would especially like to thank Josh Catalano for being the celebrity face of the campaign and for donating so much of his valuable time.

The success of Dine4Dementia has inspired us to make this an annual event, and we look forward to more dining adventures with you, our supporters, next year.

Visit our Dine4Dementia Facebook page at www.Facebook.com/Dine4Dementia or go to www.Dine4Dementia.com.au to register to host your own event.

2012

dINE4dEMENTIA IN ITS INAuGuRAL YEAR hAS RAISEd MORE ThAN $25,000 TO dATE.

To all our supporters who registered to host a Dine4Dementia dining event to raise vital funds and awareness, and to all the guests who supported their efforts, we relay our gratitude to you.

dEMENTIA ANd STIGMARecently published research into the public perception of dementia has revealed some alarming misconceptions, with more than half of Australians mistakenly believing the symptoms of dementia are a normal part of ageing.

Alzheimer’s Australia President Ita Buttrose said the results reflected a lack of awareness and stigma surrounding dementia that could lead to social exclusion for people with dementia, their carers and their families, and also cause delays in seeking medical help.

“Instead of supporting people at a time of great difficulty and challenge, the instinct for many in our community is to turn their back and walk away.” Ms Buttrose said.

The results were from a Newspoll survey and a pilot study Exploring Dementia and Stigma Beliefs by the Centre of Health Initiatives at the University of Wollongong.

Other findings included:• One in ten Australians between

the age of 19-34 had not even heard of Alzheimer’s disease, the most common form of dementia.

• More than half of the survey respondents indicated people with dementia could not be expected to have a meaningful conversation.

• One in three respondents found people with dementia irritating.

• One in ten said they would avoid spending time with a person with dementia.

1. Josh Catalano at the Karrinyup launch of Dine4Dementia. 2. Rae Bransgrove, Alzheimer’s Australia WA, and Peta Adams, Cancer Council, at the Kalgoorlie Dine4Dementia lunch held at the Eastern Goldfields community centre. The Kalgoorlie team invited the local nursing homes and senior members in the community as well. 3. The City of Albany held a mini-expo for their Dine4Dementia event.

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Ms Buttrose said a diagnosis of dementia brought with it social isolation and a sense of shame for the individual.

“There are the personal memories of my dad doing things that were quite out of character, both amusing and sad,” said Ms Buttrose.

“But the enduring memories for me are those of how cruel we are as a society to people with dementia and as a consequence to their families and those who love them.”

Ms Buttrose said change would only come through a greater awareness and understanding of dementia and a national approach to promoting awareness.

“The Living Longer, Living Better package set the scene for significant reform in aged care and a new determination to tackle dementia both as a health and aged care issue,” Ms Buttrose said.

“We want to get the message across that as a society we can beat dementia in the same way we have tackled HIV/Aids, cancer and heart disease.”

“The Government has yet to address the serious inequity in research funding. Dementia research is grossly underfunded in relation to health and care costs, disability burden and prevalence compared to other chronic diseases.”

Alzheimer’s Australia is advocating for an increase of $200 million government investment for research which would be equivalent to 1% of the total cost of care.

Ms Buttrose said the next stage of their campaign was to work towards a world without dementia.

“It is an ambitious goal, but one which I know is worth fighting for,” said Ita.

4. The WA Police used their Annual Police Commissioned Officers’ Mess Formal Dine-In Night as their Dine4Dementia event. Pictured here is Josh Catalano, Governor McCusker, Commissioner Karl O’Callaghan (Patron of the WA Police Commissioned Officers’ Mess), and Assistant Commissioner Duane Bell, President of the WA Police Commissioned Officers’ Mess. 5. Kristen Rodrigo and her partner James held a housewarming party in memory of Kristien’s stepfather Andrew Vitaljich. 6. Amana living held a fundraising lunch at Lefroy Hostel in Bull creek. Health and safety consultant Natasha Downs is pictured here with one of the hostel’s residents. 7. Judy and Matteo at the Dine4Dementia launch. They were the highest individual fundraisers for the 2011 Memory Walk. 8. Dina Shah was inspired to hold a tea party for Dine4Dementia after receiving help from Alzheimer’s Australia WA for her mother with dementia who still lives in Kenya. 9. Lynette Delane, who lost both her father and uncle to dementia, held two Dine4Dementia events, one for her friends and one for her family. 10. Roleystone Volunteer Fire Brigade held a Dine4Dementia dinner “because it was a good cause.”

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IT TAkES TwO TO TANGO SO kEEP dANCING!

It can be easy to feel overwhelmed and worried following the battery of tests, scans and doctors appointments.

But perhaps this can be a time to stop and take stock of what is still good about life and what really matters. Whilst having Alzheimer’s disease may be an untimely blow, it can be a time to remember to fully embrace our relationships and to enjoy all aspects of our lives as much as possible. It is a time to continue to enjoy eating healthy nutritious food, doing some regular exercise and participating in those things you enjoy, with a variety of social and stimulating activities.

Having memory problems does not translate into a loss of ability in all areas. It’s not “all or nothing”. As a carer, while it is human nature to want to help and look after a person with Alzheimer’s disease, and while it may seem easier sometimes to take over a task or to do the remembering, this isn’t the best way to help. It is vital that a person with memory problems is encouraged to undertake as many of their usual activities as possible, even if they are completed imperfectly or take longer than usual. This is all about continuing to feel useful. Being able to take part in normal everyday activities is so very important for maintaining self-esteem and confidence.

In the same way as having a broken leg can make it a bit harder to get about, that doesn’t mean that all normal activities have to cease. Although this may require some adaptation, and perhaps a new way of doing things!

Because our brain is so plastic, it is able to continue to adapt to changing circumstances. The changes affecting the brain in Alzheimer’s disease and other forms of dementia are gradual. If we continue to engage our various brain circuitries to the best of our ability for as long as possible, we are more likely to be able to carry out our activities of daily living and stay in our home environment for longer.

Yes, there will be times when memory problems may make assistance necessary, and yes there will be times when having memory problems can cause frustration or a sense of loss, but having a spouse or partner, family and friends around can all help to make things a bit easier.

While it can feel embarrassing if our memory lets us down in public, that can be lessened if the social setting we are in is small and we are with people we know. Keeping socially connected as much as possible is very important, so perhaps this could include going out for dinner with friends, watching the grandchildren

play sport or keeping up with hobbies such as dancing, painting, playing music and singing.

And whilst the focus of attention is often on the person with the diagnosis, all of the above applies equally to the caregiver who is often the spouse or partner. As a carer, being the other person in the relationship means it is just as important to ensure you remain both physically and mentally well too. Wanting to manage everything without help (and misplaced pride) can, on occasion, lead to exhaustion and your own ill health. Both of you need the best of care for each other to maintain your relationship and wellbeing.

There are many agencies that can provide help (and often willing family members) who, if given the opportunity, can provide valuable assistance and respite.

Memory problems aside, what matters the most? I would suggest it is nurturing the love and care of the people we care the most about, maintaining our social contacts and continuing to do the things we enjoy.

As the saying goes, it takes two to tango, so meanwhile just keep on dancing.

dR JENNY BROCkIS

BEING GIvEN A dIAGNOSIS Of ALzhEIMER’S dISEASE OR OThER fORMS Of dEMENTIA CAN BE AN ENORMOuS ChALLENGE fOR ThE PERSON CONCERNEd, ANd Of COuRSE ThEIR fAMILY.

YES! I wANT TO MAkE A dIffERENCE fOR PEOPLE wITh dEMENTIA!Name: ________________________________________________________________________________________________________

Address: _________________________________________________________________________ Postcode: ___________________

Tel: ______________________________ Mobile: _________________________ Email: _____________________________________

Pleaase accept my gift of: or my choice of

My cheque is enclosed, crossed “Not Negotiable” and made payable to “Alzheimer’s Australia WA Ltd” or

Please debit my Mastercard Visa Amex Diners Donations over $2 are tax deductible

Please send me information about making a bequestAlzheimer’s Australia WA, PO Box 1509, Subiaco, WA 6904 | ACN: 102 951 986 | Tel: (08) 9388 2800 | Fax: (08) 9388 2739 Donate online: www.fightdementia.org.au/givewa

Exp. Date: ________________

Name on card: __________________________________________________________ Signed: ______________________________

$25 $50 $100 $

Spring 2012

✁


EuROPE BY BICYCLEA warm and heartfelt thanks to Diane and Frank Broadby, who raised vital funds and awareness for Alzheimer’s Australia WA through their amazing bicycle journey across Europe.

Their ride took them 3080 km from Nantes, France to Budapest, Hungary. Their “Ross Tour”, named after their late friend, raised more than $3000 in donations and took eight weeks to complete.

We congratulate them on completing their voyage safely and applaud them for their endurance, generosity and spirit of adventure.

Philippa BakerLeigh GibbJamie CurtisAnne CurtisCharlotte CurtisJackie PowerDeirdre O’Sullivan Doug TresiseLisa TresiseCorey TresiseCora StapletonSarah SkeddMandy BeattieDianne TullisSharon MurphyMarissa CourtLaria VergottiniJacoline Steinhobel

Kristy WrootHeath FitzpatrickGeorgina RogersAmy GoodenBrian GardnerDilwyn GriffithsHeidi Van RooyenJames GrahamKarleen HalsallKim HenryLilly BurridgeMichelle LawrencePaige Anderton Phoebe AndersonSarah BurrowsSuzanne CracknellTiing LioTom TolchardDiane and Frank at Chateau at Chamont sur Loire, France.

TAkING ON ALzhEIMER’SGIvING TO AuSTRALIA

CITY TO SuRf Alzheimer’s Australia WA would like to congratulate and thank all our supporters who ran in the City to Surf on 28 August and helped to raise vital funds and awareness about dementia. From the 4km walk to the full marathon, we appreciate their efforts in running for a cause and making a difference, big or small.


fOR hEALTh ANd AGEd CARE STAffPOSITIvE dEMENTIA CAREThis workshop will provide you with the underpinning knowledge and skills needed to interact effectively with people who have dementia.

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

Time: 9.30am to 4.00pm When: 21 September 15 October 13 November 11 December Cost: $132 (lunch included)

Attendance attracts 6 RCNA CNE points as part of RCNA’s Life Long Learning program (3LP).

ExPERIENCING dEMENTIAThis simulation and workshop offers you the opportunity to experience some of the feelings and emotions that may be associated with having dementia.


Time: 9.30am to 3.30pmWhen: 18 September 9 NovemberCost: $165 (lunch included)

REMINISCENCE ANd LIfE STORIESThis workshop provides people who work in dementia care with the knowledge and skills to engage in reminiscing and create a life story book with a person with dementia, with the support of their family and friends.


Time: 1.30pm to 4.30pm When: 19 SeptemberCost: $77

INTELLECTuAL dISABILITY ANd dEMENTIA This workshop provides participants with knowledge and skills to interact effectively with people who have an intellectual disability (ID) such as Down syndrome and dementia.


Time: 9.30am to 4.00pmWhen: 19 OctoberCost: $132 (lunch included)

Attendance attracts 6 RCNA CNE points as part of RCNA’s Life Long Learning Program (3LP).

ASSISTIvE TEChNOLOGY IN dEMENTIA CARE This workshop provides participants with an understanding of the equipment and technologies available that can improve independence and quality of life for a person with dementia and minimise the care they require. It also illustrates how these technologies are currently used in care environments within Australia and internationally.


Time: 1.00pm to 4.00pmWhen: 14 NovemberCost: $77

dEMENTIA CARE IN hOSPITALS This workshop will provide staff working in acute care settings with information and strategies to deliver person centred care to patients with dementia.


Time: 8.30am to 3.30pm When: 20 NovemberCost: Free for staff working in

acute care (lunch included)

Attendance attracts 6 RCNA CNE points as part of the RCNA’s Life Long Learning Program (3LP)

2012 dEMENTIA EduCATIONCOuRSES ANd wORkShOPS


ART ANd dEMENTIA MASTER CLASSLearn how to use 2D and 3D materials in creating an artistic program for people with dementia.


Time: 9.30am to 4.00pm When: 30 OctoberCost: $132 (lunch included)

fOR fAMILY ANd fRIENdSfAMILY MEMBER ANd fRIENdS COuRSEThis free two day course is for people who know or care for a person with dementia. It is designed to give an understanding of dementia, what happens to a person when they develop dementia and how to communicate with, and support a person with dementia.


Time: 10.00am to 3.30pm (Lunch provided)

When: Two full day sessions a fortnight apart (lunch included)

12 & 26 September 19 November & 3 December

MINd YOuR MINdThis free workshop covers the seven lifestyle changes you can make now to reduce your risk of developing dementia.


When: 20 September (10.00am to 12.00pm)

10 October (2.00pm to 4.00pm)

14 November (6.00pm to 8.00pm)

CARING fOR A YOuNGER PERSON wITh dEMENTIA Free course, please call 9388 2800 for details.

REMINISCENCE ANd LIfE STORIESThis free workshop provides families and friends the knowledge and skills to engage in reminiscing and to create a life story book for a person with dementia.


Time: 1.00pm to 3.00pm When: 3 October

For a complete list of workshops or to book, please call (08) 9388 2800 during office hours or visit www.fightdementia.org.au/wa

For a complete list of workshops or for bookings, please call (08) 9388 2800 during office hours or visit www.fightdementia.org.au/wa

ALzhEIMER’S AuSTRALIA wA LTdABN 82 102 951 986

hEAd OffICE9 Bedbrook Place Shenton Park WA 6008Telephone: (08) 9388 2800Facsimile: (08) 9388 2739

PO Box 1509, Subiaco WA 6904

Email Address: [email protected]: www.fightdementia.org.au/wa

facebook.com/alzheimersaustraliawa

twitter.com/alzheimerswa

REGIONAL OffICESAlbany: (08) 9841 3755Kalgoorlie: (08) 9091 1644Mandurah: (08) 9535 8772York: (08) 9641 2865Rockingham branch: (08) 9592 7675

Since 1982, Alzheimer’s Australia WA has been working to improve the lives of people with dementia and their families. Today, we are the peak dementia organisation providing leadership in care, advocacy and education to people living with dementia and the health and aged care industry.

MILESTONES EdITORSean Barrett, Public Affairs [email protected]

DisclaimerArticles in this publication provide a general summary of the subject matter covered. Any person with dementia should seek professional advice about their specific case. Alzheimer’s Australia WA is not liable for any error or omission in this publication. Permission should be sought from the Editor before reproducing articles and/or images. Should permission be given, the source must be acknowledged.

dEMENTIA hELPLINE 1800 100 500

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