FIGHT DEMENTIA ACTION PLAN

Transcription

1 FIGHT DEMENTIA ACTION PLAN DEMENTIA IS A HEALTH PRIORITY Dementia will be the majr health prblem f this century. Over ne millin Australians are already affected by the disease themselves r are caring fr a persn with dementia. 1 T many Australians d nt understand that dementia is a chrnic disease and nt a natural cnsequence f ld age. Australia can beat dementia if we tackle it the same way as we have heart disease and cancer. The case fr actin t cmbat dementia ver the next 10 years is verwhelming. Each week, there are 1,500 new cases f dementia in Australia. That is expected t grw t 7,400 new cases each week by There are 267,000 3 Australians living with dementia tday and ver ne millin Australians prvide supprt fr them. 8 Dementia is the third mst cmmn cause f death. 4 Dementia csts the health system $6 billin per annum and will becme the third greatest surce f health and residential aged care expenditure within 20 years. 5 Dementia will affect everybdy s lives in ne way r anther. There will be nearly ne millin peple with dementia by 2050 the equivalent f a city three times the size f Canberra. That is the wrld we will face in We need Gvernment t restre dementia as a health pririty nw and t invest in actin t cmbat the dementia epidemic. Alzheimer s Australia wants the 2012/13 Federal Budget t allcate an extra $500 millin ver the next 5 years t: 1. Prmte awareness f dementia 2. Achieve timely diagnsis f dementia 3. Prvide quality dementia care in cmmunity, residential and acute care settings 4. Reduce the future numbers f peple with dementia 5. Make Australians aware they may be able t reduce their risk f dementia 1 Pfizer Health Reprt Issue #45 Dementia, March Keeping Dementia Frnt f Mind: Incidence and prevalence , Access Ecnmics, August Dementia Acrss Australia: , Delitte Access Ecnmics, September Causes f Death, Australia, 2009, Australian Bureau f Statistics, May The Dementia Epidemic: Ecnmic Impact and Psitive Slutins fr Australia, Access Ecnmics 2003 Visit: fightdementia@alzheimers.rg.au

2 RESTORE DEMENTIA AS A HEALTH PRIORITY THROUGH THESE ACTIONS: Awareness Reduce the stigma and scial islatin that result frm dementia Fund a tw year, $15 millin infrmatin campaign t tackle cmmunity ignrance f dementia. Diagnsis Reduce the time between the first signs f memry lss t diagnsis Invest $53 millin ver five years t address barriers t timely diagnsis by emplying specialist dementia nurses and prviding training and educatin prgrams fr dctrs and nurses. Care Imprve access t quality dementia care and supprt services Invest $228 millin ver five years t: Supprt service staff and family carers thrugh expanded training and Dementia Behaviur Management Advisry Services. Fund an integrated suite f services t assist peple with dementia and family carers with infrmatin, supprt, educatin, cunselling and access t services. Develp systems t make hspitals safer places fr peple with dementia by increasing recgnitin f thse with dementia and imprving crdinatin and supprt systems. Imprve access t services fr individuals with yunger nset dementia. Research Ensure access t supprt and services fr individuals wh have severe behaviural and psychlgical symptms f dementia. Reduce the future number f peple with dementia An additinal $40 millin investment per year int dementia research is required if we are t find new treatments and better ways t manage the disease. This wuld be equivalent t a ttal research spend f abut 1% f the ttal cst f dementia care. Risk Reductin Reduce the risk f dementia fr Australians Fund a $4 millin public educatin campaign t make Australians aware that they may be able t reduce their risk f dementia bth by management f ther chrnic diseases which increase the risk f dementia (e.g. strke, diabetes, hypertensin, besity) and by changes in lifestyle including scial and mental activity, nutritin and physical exercise. We can fight dementia and imprve the present and future quality f life f all Australians. Visit: fightdementia@alzheimers.rg.au

3 CAMPAIGN BRIEF: WHY DO WE NEED ACTION ON DEMENTIA? Changes in Gvernment Plicy The Gvernment has terminated the Dementia Initiative and risks squandering 6 years f investment. The Dementia Initiative - Making Dementia a Natinal Health Pririty was implemented in the 2005 Federal Budget with $320 millin in funding ver 5 years. At the end f 5 years bth majr parties supprted cntinuing the Initiative. The Dementia Initiative was a landmark fr peple living with dementia because it recgnised the scale f the prblem and its impact n the quality f life f Australians. The main elements f the Initiative included: High care dementia cmmunity packages; Dementia Care Essentials Training at the Certificate Level 3; Dementia Behaviur Management Advisry Service (services that prvide advice t thse in the cmmunity and residential care staff); The Natinal Dementia Supprt Prgram managed by Alzheimer s Australia which prvides infrmatin, cunselling and supprt; Funding fr the Dementia Cllabrative Research Centres; Cmmunity supprt grants (grants f up t $50,000 t cmmunity grups); and Funding initiatives such dementia research grants and cnsultancies n issues such as dementia pathways, primary care and a cmmunicatins strategy. Has the Initiative been effective? The Gvernment has n evidence t justify terminating the Dementia Initiative. The Dementia Initiative has been independently evaluated and was fund t have made a substantial cntributin t supprt peple living with dementia and their carers. The Dementia Initiative lifted the prfile f dementia by making it a Natinal Health Pririty and develping a crdinated plicy respnse. Australia was the first cuntry in the wrld t make dementia a health pririty and gave Australia a chance t be a leader in this field. The investment in the Dementia Initiative shuld be built upn t further imprve the quality f dementia care thrugh training, Dementia Behaviur Management Advisry services and getting research int practice. Mrever there are imprtant issues that have been neglected and require urgent attentin - issues such as timely diagnsis f dementia, making hspitals safer places fr peple with dementia, dementia risk reductin and cutting edge research int the cause f dementia. Has the Prductivity Cmmissin n Care fr Older Australians recgnised the impact f dementia n the care system? The Cmmissin has ignred dementia as the cre business f aged care. There is nt a single recmmendatin that addresses dementia r acknwledges the additinal csts f caring fr individuals with dementia at hme r in residential care. Alzheimer s Australia supprts the strategic directin f the aged care refrms as they are based n increased chice and ptins fr receiving care at hme. Hwever, the Cmmissin has made n recmmendatins t prmte awareness f dementia; t assist thse with severe Behaviural and Psychlgical Symptms f Dementia (BPSD); t greatly expand access t respite care that meets the needs f peple with dementia as well as thse f carers; r t recgnise the imprtance f dementia training and educatin fr frmal and infrmal carers if the quality f dementia care is t imprve. There is n visin fr investment in dementia research r risk reductin. Visit: fightdementia@alzheimers.rg.au

4 ACTION 1 AWARENESS What is the Prblem? Many Australians knw very little abut what dementia is r hw it develps. This lack f awareness means that sme peple may nt seek help when they experience symptms f dementia. There is cnfusin arund the disease which can lead t fear and stigma. What d we knw already? Australians assciate dementia with lss f memry and difficulties with daily functins, but mst are unaware f the effect f dementia n language r md. 6 Dementia is the third leading cause f death in Australia, yet mst Australians are nt aware that it is a terminal illness. 14 Tw ut f three Australians are scared f develping dementia - a fear secnd nly t the fear f develping cancer % f carers reprt that peple with dementia are discriminated against. 14 Almst a third f Australians say that they wuld feel uncmfrtable spending time with smene with dementia. 14 Individuals wh believe that dementia is assciated with stigma are less likely t seek help if they begin t experience memry r ther cgnitive changes. 7 In a recent pilt survey abut stigma and dementia: 15 34% f respndents fund peple with dementia t be irritating; 11% said they wuld avid spending time with peple wh had dementia; and If diagnsed with dementia, 60% anticipated that they wuld experience feelings f shame. What d we want t achieve? Reduce the stigma and scial islatin that result frm dementia This wuld mean that: Australians wuld nt avid spending time with peple wh had dementia and wuld nt anticipate feeling shame if diagnsed with dementia. All Australians wuld knw the symptms f dementia, including symptms ther than memry prblems and where t seek assistance if they experience symptms. The cmmunity wuld be aware f the Gvernment s cmprehensive strategy t address dementia. Hw can this be dne? Fund a tw year, $15 millin infrmatin campaign t tackle cmmunity ignrance f dementia. This campaign wuld include scial marketing, natinal advertising, cmmunity engagement, and educatin activities t raise awareness abut dementia. 6 Pfizer Health Reprt Issue #45 Dementia, March Unpublished reprt. University f Wllngng 7 Market research cnducted fr Alzheimer s Australia by Newspll Sept.2004 Visit: fightdementia@alzheimers.rg.au

5 ACTION 2 DIAGNOSIS What is the Prblem? Only a third f peple wh have dementia receive a diagnsis at any time in their illness. Fr thse wh are diagnsed, many d nt receive a diagnsis until three years after they first ntice symptms. Timely diagnsis is imprtant as it enables better management f the disease and allws families t access supprt and plan fr the future. What d we knw already? 94% f Australians say that if they were wrried abut their memries they wuld see their GP. 8 GPs ften d nt cmplete a full assessment as suggested in the guidelines. 9 Early symptms f yunger nset dementia are ften misdiagnsed as depressin r anxiety. There are a number f barriers t early diagnsis in primary care and these include: 10 A belief that there is n benefit t timely diagnsis; Difficulties in differentiating nrmal ageing frm dementia; GPs lack f cnfidence r knwledge and risk f misdiagnsis; A lack f apprpriate specialist diagnstic services, especially in rural areas; Limited time and lack f an effective time-efficient screening tl; Perceptin that the patient cannt cmprehend/cpe with the diagnsis; and Fear f damaging the dctr-patient relatinship. What d we want t achieve? Reduce the time between the first signs f memry lss and diagnsis We want t achieve a reductin in average time between the first appearance f symptms and the diagnsis f dementia frm 3.1 years t 12 mnths. We als need t ensure that individuals with dementia are prvided with apprpriate referrals and supprt. Hw can this be dne? Invest $53 millin ver five years t address barriers t timely diagnsis by emplying specialist dementia nurses and prviding training and educatin prgrams fr dctrs and practice nurses. This shuld be supprted by tw additinal actins: 1. Bring the Department f Health and Ageing tgether with medical and cnsumer stakehlders t determine strategies t achieve timely diagnsis. 2. Link diagnsis and management f dementia int the current health refrm prcess by acting n the strategies identified thrugh the refrm f Primary Care and mandating that Medicare Lcals include diagnsis and management f dementia as part f their reprting framewrk and needs assessment. 8 Market research cnducted fr Alzheimer s Australia by Newspll Sept Williams J., Byrne J., Pnd, D (2006). DCRC Summary: Dementia Identificatin, Assessment and Management in Cmmunity- Based Primary Health Care: A review f the internatinal literature Brdaty (2005). DCRC: Six Reasns Why Early Diagnsis f Dementia Des Nt Occur and Ten Reasns Why It Is Imprtant Visit: fightdementia@alzheimers.rg.au

6 ACTION 3 DEMENTIA CARE What is the Prblem? There is an urgent need t imprve the quality f dementia care and ensure sustainable supprt and care services fr all individuals with dementia. What d we knw already? Alzheimer s Australia struggles t meet the increasing demand fr infrmatin, cunselling and supprt services. Individuals with dementia and their families are ften unable t find apprpriate aged care services that are flexible and respnd t their needs. Aged care staff need supprt t prvide quality dementia care thrugh training prgrams and services such as the Dementia Behaviur Management Advisry Service (DBMAS). DBMAS cmbines expertise in dementia care and the translatin f knwledge t service prviders in bth the management f individual cases and thrugh training. With the number f peple with dementia set t increase by almst 50% ver the next 10 years, there will be a greater demand n supprt services fr individuals with dementia and training prgrams fr care staff. Hspitals are dangerus and cnfusing places fr peple with dementia and many have n prgrams r services t meet the needs f individuals with dementia. Funding fr the Dementia Initiative, which prvides essential cunselling and supprt prgrams, training and the DBMAS will be terminated as f After 2013 there will be n crdinated Gvernment apprach t address the care needs f peple with dementia. The final reprt f the Prductivity Cmmissin failed t acknwledge in the recmmendatins that dementia is cre business f aged care. What d we want t achieve? Imprve access t quality dementia care and supprt services Hw can this be dne? Invest $228 millin ver five years t: Supprt service staff and family carers thrugh expanded training and Dementia Behaviur Management Advisry Services. Fund Alzheimer s Australia t prvide an integrated suite f services t assist peple with dementia and family carers with infrmatin, supprt, educatin, cunselling and access t services. Develp systems t make hspitals safer places fr peple with dementia by increasing recgnitin f thse with dementia and imprving crdinatin and supprt systems. Develp apprpriate services fr thse with yunger nset dementia and fr thse with severe behaviural and psychlgical symptms f dementia. Visit: fightdementia@alzheimers.rg.au

7 ACTION 4 RESEARCH What is the prblem? Understanding the causes f dementia and finding cures r ways t delay its prgressin will remain beynd reach withut much greater investment in research. What d we knw already? By 2030 there will be 553,000 peple with dementia. 11 Dementia will becme the third greatest surce f health and residential aged care spending within tw decades. If the nset f Alzheimer s disease culd be delayed by five years, the numbers f peple with dementia wuld be halved (between 2000 and 2040). 12 Dementia research is grssly underfunded in relatin t health and care csts, disability burden and prevalence cmpared t ther chrnic diseases. 13 In the financial year, Natinal Health and Medical Research Cuncil research funding fr chrnic diseases was $144 millin fr cancer, $97.4 millin fr research n cardivascular disease, $63.1 millin fr diabetes. Alzheimer s disease and ther types f dementias received nly $19.3 millin. 14 Australia has sme f the best dementia researchers in the wrld. These scientists have begun t respnd t the challenge f dementia by frging ahead with innvative and wrld-leading breakthrughs in areas such as neurimaging, stem cell therapies, neurgenesis and bimarkers. New treatments t cure, prevent r delay dementia can nly cme frm rigrus scientific research. Such research relies bth n attracting and retaining the best and brightest scientists t the field, and n lng-term investment in research prgrams frm the gvernment. Australia has the scientific skills and capacity t fight dementia we just need the Federal Gvernment t invest. What d we want t achieve? Hw can this be dne? Reduce the future number f peple with dementia An additinal $40 millin investment per year int dementia research is required if we are t find new treatments. This wuld be equivalent t a ttal research spend f abut 1% f the ttal cst f dementia care. 11 Dementia Acrss Australia: , Delitte Access Ecnmics, September Access Ecnmics (2004) Delaying the Onset f Alzheimer s Disease: Prjectins and issues, Reprt fr Alzheimer's Australia, Canberra, September. 13 Alzheimer s Australia, Paper Number 16 Australian Dementia Research: Current Status, Future Directins?, NHMRC: Research funding statistics and data: Accessed 1 June 2011: Visit: fightdementia@alzheimers.rg.au

8 ACTION 5 DEMENTIA RISK REDUCTION What is the Prblem? There are ways f reducing the risk f dementia thrugh lifestyle changes and vascular risk factr management but mst Australians are unaware f these factrs. What d we knw already? There is nw gd evidence that we can reduce ur risk f dementia by taking cntrl f alchl use, bld pressure, bdy weight, chlesterl, depressin, diabetes, diet, head injury, mental activity, physical activity, smking and scial activity. Only 50% f Australians believe that it is pssible t reduce the risk f develping Alzheimer s disease and ther frms f dementia. 15 Even amng thse wh are aware there is smething they can d t reduce risk, mst are nly aware f the benefits f staying mentally active. 21 There is very little understanding f the links between physical and mental health. Fr example, apprximately 80% f Australians are nt aware f the ptential benefits f reducing high bld pressure, chlesterl and aviding head injuries. 21 It has been estimated that half f all cases f Alzheimer s disease (the mst cmmn frm f dementia) culd be attributed t mdifiable risk factrs. 16 It is als estimated that significant numbers f dementia cases culd be prevented by addressing risk factrs. Fr example, arund 100,000 fewer Australians wuld have dementia in 2050 if physical inactivity rates were reduced by 5% every 5 years. 17 The mdifiable risk factrs fr dementia verlap with many ther chrnic diseases such as heart disease and diabetes. Sme chrnic diseases such as diabetes are themselves risk factrs fr dementia. Alzheimer s Australia has develped and successfully implemented the first stage f the Mind Yur Mind public educatin prgram which prvides infrmatin n ways t reduce risk fr dementia. What d we want t achieve? Hw can this be dne? Reduce the risk f dementia fr Australians Fund a $4 millin public educatin campaign t make Australians aware that they may be able t reduce their risk f dementia bth by management f ther chrnic diseases which increase the risk f dementia (e.g. strke, diabetes, besity) and by changes in lifestyle including scial and mental activity, nutritin and physical exercise. 15 Pfizer Health Reprt Issue #45 Dementia, March Barnes & Yaffe (2011). The prjected effect f risk factr reductin n Alzheimer s disease. 17 Bind, Brwn & Ranmuthugala. (2010). Mdelling the impact f mdifying lifestyle risk factrs n dementia prevalence in Australian ppulatin aged 45 year and ver, Visit: fightdementia@alzheimers.rg.au