Improving services and support for older people with mental health problems

Transcription

1 Improvig services ad support for older people with metal health problems The secod report from the UK Iquiry ito Metal Health ad Well-Beig i Later Life

2 This publicatio may be reproduced free of charge for research, private study or for iteral circulatio withi a orgaisatio. This is subject to it beig reproduced accurately ad ot used i a misleadig cotext. The material must be ackowledged ad the title of the publicatio specified. This publicatio may be dowloaded from Copies are also available from: Age Cocer Eglad Policy Uit Astral House 1268 Lodo Road Lodo SW16 4ER Tel: +44 (0) policy@ace.org.uk Writte by Michele Lee, Iquiry Project Maager, o behalf of the Iquiry Board Published by Age Cocer Eglad August 2007 Desiged ad illustrated by Sim Desig (ifo@sim-desig.co.uk) This report has bee prited o recycled paper ISBN:

3 Cotets Foreword... 3 Executive summary... 4 List of recommedatios Itroductio Why is this importat? Call to actio Evidece i this report Facts, figures ad policy Prevalece Depressio Axiety Suicide ad self-harm Delirium (acute cofusio) Demetia Schizophreia ad other severe metal health problems Alcohol ad drug misuse Services ad support Policy cotext Edig discrimiatio Curret perspectives o discrimiatio Age discrimiatio Stigma Other forms of discrimiatio Layers of ivisibility Makig a differece Prioritisig prevetio Curret perspectives o prevetio Depressio ad axiety Suicide Delirium (acute cofusio) Demetia Alcohol ad drug misuse Makig a differece... 55

4 5. Eablig older people to help themselves ad each other Curret perspectives o self-help ad peer support Meaigful activity Support from frieds, family ad others Iformatio Advocacy Support for upaid carers Makig a differece Improvig curret services Curret perspectives o services Housig Primary care Social care Specialist metal health services Acute hospitals Care homes Makig a differece Facilitatig chage Curret perspectives o chage Workforce developmet Workforce educatio ad traiig Capacity buildig ad support Ivestmet Leadership Makig a differece Coclusios Recommedatios Notes Refereces Ackowledgemets

5 Foreword This Iquiry s first report drew attetio to the eglect of both metal health ad of older people i may areas of policy ad resource allocatio. We highlighted the opportuities to improve metal health i later life ad cofirmed that deterioratig metal health is ot a ievitable part of the agig process. We are ecouraged by the iterest that has bee show i the first report ad are pleased that Age Cocer has agreed to moitor progress i the implemetatio of our recommedatios. This secod report reviews the services available to older people who experiece metal health problems. We add our evidece to that of may other orgaisatios i demostratig the iadequacies of these services i rage, i quatity ad i quality. Ad we add our voices to those of others i callig for care that meets older people s eeds, that receives a fair allocatio of resources ad that respects the digity ad humaity of the service users. We have attempted to provide a broad picture, recogisig demetia as a importat problem but stressig the high prevalece of depressio, much of which is udiagosed ad uder-treated. We highlight the plight of may people experiece multiple disadvatage because they are older, have metal health problems ad also have to cope with other difficulties such as sesory loss or homelessess. These people are curretly ivisible i UK society, with few advocates to put their case for the fair treatmet that should be a hallmark of a civilised society. May older people with metal health problems ca be helped to maitai a active ad productive role i society. Although more resources are eeded, much ca be achieved by chages i attitude ad more imagiative approaches to service delivery. We are grateful to Age Cocer for its cotiuig support of this iquiry ad for its commitmet to moitor progress i this field ad to work with others to press for improvemets. I would like to thak the may idividuals who have supported this Iquiry ad give ustitigly of their time ad eergy. I am most grateful to all the members of the Iquiry Board, the Advisory Group ad our Govermet participats. Sir William Uttig CB, the Deputy Chairma of the Board, has throughout bee a source of immese experiece ad wisdom. It has bee a great privilege to work with such colleagues. The Board members all joi me i thakig our secretariat. Philip Hurst, from Age Cocer Eglad has provided valuable up-to-date iformatio about policy o ageig at a time of rapid chage. Michele Lee, the project maager, has worked with great eergy ad determiatio. Ay success that we achieve will be maily thaks to her hard work. We hope that our work will geerate actio as well as iterest, ad will thus achieve our prime aim of improvig the well-beig of older people with metal health problems. Dr Jue Crow CBE Chairma of the Iquiry 3

6 Improvig services ad support for older people with metal health problems Executive summary This is the secod ad fial report of the UK Iquiry ito Metal Health ad Well-Beig i Later Life. The Iquiry was lauched i late 2003 as a result of cocer that metal health i later life is a much eglected area. It published its first report, Promotig Metal Health ad Well-Beig i Later Life, i This report sets out to aswer a importat ad timely questio: How ca we improve services ad support for older people with metal health problems? The Iquiry s visio is of a society where the eeds of older people with metal health problems ad the eeds of their carers are uderstood, take seriously, give their fair share of attetio ad resources, ad met i a way that eables them to lead meaigful ad productive lives. The Iquiry believes that this ca be achieved, ad that this achievemet will beefit society as a whole. Why is this importat? Older people s metal health is a icreasigly importat area of public policy that does ot get the attetio it deserves. Three millio older people i the UK experiece symptoms of metal health problems that sigificatly impact o quality of life, ad this umber is set to grow by a third over the ext 15 years. This represets a eormous cost to society ad the ecoomy, i direct costs to public services ad idirect costs i lost cotributios from older people who boost the UK ecoomy by over 250 billio each year as workers, voluteers, upaid carers ad gradparets. At a time whe the Govermet wats to make the most of older people s cotributios to society, the eglect of older people s metal health eeds represets a waste of huma potetial that we caot afford. This report draws o evidece from older people, carers, orgaisatios ad professioals, ad makes recommedatios for ways to improve services ad support for older people with metal health problems. Facts, figures ad policy The rage of metal health problems experieced i later life is very wide. It icludes depressio, axiety, delirium (acute cofusio), demetia, schizophreia ad other severe metal health problems, ad alcohol ad drug misuse. This report presets a comprehesive review of key facts ad figures relatig to each of these, as well as facts ad figures o services ad sources of support. There is tremedous umet eed i every area: Oe i four older people livig i the commuity have symptoms of depressio that are severe eough to warrat itervetio. Oly a third of older people with depressio ever discuss it with their GP. Oly half of them are diagosed ad treated, primarily with ati-depressats. 4

7 Executive summary Depressio is the leadig risk factor for suicide. Older me ad wome have some of the highest suicide rates of all ages i the UK. Demetia costs the health ad social care ecoomy more tha cacer, heart disease ad stroke combied. Fewer tha half of older people with demetia ever receive a diagosis. A third of people who provide upaid care for a older perso with demetia have depressio. Delirium or acute cofusio affects up to 50 per cet of older people who have operatios. There are approximately 70,000 older people with schizophreia i the UK. People aged betwee 55 ad 74 have the highest rates of alcohol-related deaths i the UK. It is agreed that rates of both prescriptio ad illicit drug misuse i later life are uder-estimated but few if ay defiitive statistics exist. The UK four atios face commo challeges i developig policies o older people s metal health but have proposed some differet solutios. There is commitmet to age equality i policy. Strog leadership is eeded throughout the system to deliver the iteded outcomes i practice. The Iquiry has idetified five mai areas for actio. Edig discrimiatio is the first priority. Older people with metal health problems face discrimiatio i policy, practice ad research. Direct age discrimiatio, such as age barriers to accessig services, ca have a devastatig effect: Goig to a group ad mixig with others who had similar problems as me was good. Ad havig someoe to talk to I liked my support worker. But I ca t get that ow because of my age I feel aloe ad isolated. I feel as if there s o reaso to get up. I feel terrible I feel suicidal. I was goig to harm myself recetly. Older people also face idirect age discrimiatio ad ageist attitudes: Mum driks a lot. I thik it s abuse. It s iterestig whe I tell people as they say thigs like, If that helps her the let her. I woder if it would be the same reactio to someoe youger? 5

8 Improvig services ad support for older people with metal health problems Stigma has a terrible impact. It iteracts with ageism to make older people with metal health problems ivisible. The thig is if you ve got a broke arm you ve got people watig to help Let me cook you a meal. But if you ve got a broke heart ad a broke head they just do t wat to kow. What eeds to be doe? Remove age barriers to accessig services Esure that specialist services for older people are properly resourced Tackle the stigma attached to metal health issues Pay more attetio to ivisible groups like older people with alcohol ad drug misuse problems, ad people growig older with severe metal health problems Prioritisig prevetio is essetial. May metal health problems i later life ca be preveted. The risk factors for depressio, axiety, suicide, delirium ad some types of demetia are well kow. Social isolatio is a commo risk factor across a rage of problems. The problems are diverse but all of them require prevetative actio at multiple levels, from the idividual to the broader policy level. It helps me to be able to talk to someoe eve havig someoe that I could get hold of o the phoe would be good I feel I should get help to keep thigs goig rather tha waitig for thigs to go wrog before I get support. I feel isolated. What eeds to be doe? Challege the widespread defeatism which leads people to believe that metal health problems are a ievitable part of growig older ad therefore othig ca be doe Reduce isolatio ad stregthe social support for older people Focus o prevetig depressio ad delirium Eablig older people to help themselves ad each other is importat. Oly a small percetage of older people with metal health problems receive help through formal services. The vast majority cope usig their ow resources, so support for selfhelp ad peer support is ecessary. Use it or lose it! I work myself to the boe, ad it works for me. Seve years o [from beig diagosed] I m still livig with demetia, ot dyig from it. 6

9 Executive summary Older people poit to the importace of participatio ad relatioships. Peer support from others who have had similar experieces is particularly valued. Providig support for frieds, family ad other upaid carers is crucial give the major role they play i carig for older people with metal health problems. Upaid carers themselves are ofte older ad also at risk of developig metal health problems. What eeds to be doe? Put more emphasis o commuity developmet iitiatives that eable older people to help themselves ad each other Promote peer support Provide support for upaid carers Improvig curret services is ecessary. Although oly a miority of older people with metal health problems access them, housig, health ad social care services ca play a importat role. Primary care is where may older people tur to for help ad providers play a crucial role i the iitial idetificatio of metal health problems ad the co-ordiatio of care. Social care helps older people to maitai idepedece ad well-beig but services are uder pressure. Housig support eables older people with metal health problems to live i their ow homes but its role is ofte overlooked. Acute hospitals ad care homes are importat settigs because so may older people there experiece metal health problems. There is cosiderable scope for improvig all of these services. The challege is to provide services that older people wat. I wet to my doctor ad he suggested Prozac. I told him o medicatio, especially Prozac. He s a ice eough guy usually, but whe I said I just wated to talk to someoe, he totally patroised me. What eeds to be doe? Develop itervetios at the idividual ad systemic levels Develop models of collaborative workig with metal health specialists Pay more attetio to the role of housig support Facilitatig chage requires actio i several areas. We should feel optimistic about chage as there are may opportuities, with policy emphasis o age equality ad self-directed support. Improved educatio, traiig ad support for those who work with older people will facilitate chage. Stroger professioal, maagerial ad political leadership is essetial, as is the effective targetig of much-eeded ivestmet. 7

10 Improvig services ad support for older people with metal health problems What eeds to be doe? Provide educatio, traiig ad support Icrease ivestmet Stregthe leadership Coclusios The levels of umet metal health eeds amogst older people are extremely high. The facts about metal health problems i later life should geerate a sese of urgecy ad of ager about the lack of attetio paid to them. Yet there is still a resoudig silece. Age discrimiatio remais the fudametal problem. It comes i various forms, all of which must be tackled. Oe i four people aged 65 ad over have symptoms of depressio, much of which could be preveted. This demads the developmet of a public health approach to depressio i later life. The majority of older people with metal health problems do ot receive services. We eed to shift our attetio to them, to esure that they are supported by loved oes ad eabled to care for themselves by desig, ot by accidet or eglect. We eed to take actio o the metal health problems for which there is strog evidece of what works (such as depressio, axiety, delirium, demetia) ad we eed to pay more attetio to problems that have bee ivisible to date but which will become more pressig i the future, such as older people with alcohol ad drug misuse problems ad people growig older with severe ad edurig metal health problems. There is o time to waste. As our populatio ages, we must esure that the umbers of older people who suffer metal health problems are miimised. Metally healthy ageig will make a key differece betwee a society that is able to esure that later life is ejoyable ad fulfillig ad oe that is ot. Recommedatios The Iquiry makes 35 recommedatios which are listed i Chapter 9 ad o pages 9-12, alog with the recommedatios from the Iquiry s first report. Age Cocer have agreed to audit resposes to these recommedatios ad report o progress i

11 UK Iquiry ito Metal Health ad Well-Beig i Later Life List of recommedatios First report Who No. What Local authorities Govermet Health departmets Educatio departmets 9 Public bodies Public bodies ad busiesses Age Cocer ad the Metal Health Foudatio Establish Healthy Ageig programmes, ivolvig all relevat local authority departmets, i partership with other agecies. Idetify fudig for ad support commuity-based projects that ivolve older people ad beefit their metal health ad well-beig. Itroduce a duty o public bodies to promote age equality by See Recommedatio 4 from the Iquiry s secod report. Esure that the Commissio for Equality ad Huma Rights tackles age discrimiatio as a early priority i its work programme. See Recommedatio 6 from the Iquiry s secod report. Esure that the 2007 Comprehesive Spedig Review takes ito accout the fidigs of this Iquiry, ad commit to settig a target date for edig pesioer poverty. Govermet should publish, by 2009, a timetable for achievig this ad report o progress agaist milestoes. Work to achieve cosesus, both withi Govermet ad with exteral stakeholders, o log-term pesio arragemets. Esure that active ageig programmes promote metal as well as physical health ad well-beig i their desig, delivery ad evaluatio. Esure that metal health promotio programmes iclude ad provide for older people. See Recommedatio 10 from the Iquiry s secod report. Esure that school programmes promote attitudes ad behaviour that will lead to good metal health ad wellbeig ad healthy ageig. Ecourage work practices that support a healthy work-life balace for employees, as a cotributio to log-term metal health ad well-beig. 11 Abolish madatory retiremet ages ad eable flexible retiremet for older employees. 12 Provide pre-retiremet iformatio ad support for all employees Educate ad trai all staff who have direct cotact with the public to value ad respect older people. See Recommedatio 32 from the Iquiry s secod report. Work with other orgaisatios, icludig the media, to improve public attitudes towards older people ad promote a better uderstadig of metal health issues. See Recommedatio 24 from the Iquiry s secod report. Volutary orgaisatios ad local authorities 15 Ecourage ad support older people to take advatage of opportuities for meaigful activity, social iteractio ad physical activity; ad provide iformatio, advice ad support to eable people to claim the beefits to which they are etitled. 9

12 UK Iquiry ito Metal Health ad Well-Beig i Later Life List of recommedatios Secod report Recommedatios 1, 3, 5, 18 ad 31 require immediate attetio. Who No. What Govermet Commissio for Equality ad Huma Rights 1 Establish, by 2008, a high-level task force, led by a Govermet miister, to co-ordiate ad drive the developmet ad improvemet of services ad support to meet the metal health eeds of older people ad promote good metal health i later life. 2 Esure that oe miister has resposibility for metal health issues for adults of all ages Esure that the priciple of age equality is icorporated ito all metal health policies, performace idicators, strategies ad iitiatives across Govermet by 2008, ad esure that older people s specific eeds are idetified ad addressed. Itroduce a duty o public bodies to promote age equality by See Recommedatio 3 from the Iquiry s first report. Icrease ivestmet i services ad support for older people with metal health problems ad their carers, to esure equality with youger adults. Coduct a iquiry i 2008 ito equality ad huma rights i metal health services, with a focus o age equality. See Recommedatio 4 from the Iquiry s first report. 7 Develop a comprehesive older people s metal health strategy ad establish a body to co-ordiate implemetatio. 8 Require Chief Medical Officers to iclude older people s metal health ad draw attetio to late life depressio as a public health issue i their aual reports. Health departmets 9 Esure that atioal ad local suicide prevetio strategies ad iitiatives idetify older people as a priority group NHS 12 Esure that ati-stigma ad public metal health educatio campaigs iclude older people ad address late life metal health problems. See Recommedatio 8 from the Iquiry s first report. Support research ito overlooked areas of older people s metal health, icludig the views ad experieces of older people ad their carers, older people with alcohol ad drug problems ad people growig older with severe ad edurig metal health problems. Develop the Quality ad Outcomes Framework (QOF) of the GP cotract to create icetives for GP practices to idetify ad treat depressio ad axiety i accordace with cliical guidelies i order to tackle the problem of uder-diagosis ad uder-treatmet of late life depressio. 10

13 UK Iquiry ito Metal Health ad Well-Beig i Later Life List of recommedatios Secod report (cotiued) Who No. What NHS ad local govermet Housig departmets ad housig authorities Health, social care ad housig commissioers Volutary orgaisatios Esure that strategies to promote well-beig ad their relevat performace idicators iclude ad provide for older people with metal health problems. Support the developmet of commuity-based iitiatives to reduce isolatio ad ehace social support for older people who have, or who are at risk of developig, metal health problems. Esure that iitiatives that aim to maximise choice ad cotrol are offered to ad developed for older people with metal health problems, ad their carers, with appropriate support where eeded. Ivolve older people with metal health problems ad their carers i the plaig, delivery ad moitorig of services, with appropriate support where eeded. Develop ad review atioal, regioal ad local housig strategies to esure that older people s metal health eeds are assessed ad respoded to withi geeral ad specialist provisio. Develop a comprehesive commissioig framework for metal health services for all adults which esures that metal health services that specialise i workig with older people are adequately resourced. Develop stadards that require staff i differet settigs to work with metal health specialists to recogise, moitor ad respod to the kow risk factors for depressio, axiety, suicide, delirium ad alcohol ad drug problems i older people, ad moitor compliace. Develop stadards that require services to provide regular surveillace that will prevet physical health problems from developig or deterioratig (potetially affectig or beig misdiagosed as metal health problems) ad moitor compliace. Esure the provisio of flexible home care that offers emotioal as well as practical support to older people with metal health problems ad their carers at a early stage. 22 Support the developmet of iformatio, advocacy, self-help ad peer support groups for older people with metal health problems ad their carers. 23 Esure that suitable metal health services are available ad accessible to older people with metal health problems. 24 Work with professioal bodies, with the media ad with older people to publicise positive stories of hope ad recovery from metal health problems i later life. See Recommedatio 14 from the Iquiry s first report. 25 Prepare youger adults with metal health problems for trasitios i later life. 11

14 UK Iquiry ito Metal Health ad Well-Beig i Later Life List of recommedatios Secod report (cotiued) Who No. What Acute trusts Care homes 28 Ispectio ad regulatory bodies Professioal regulatory authorities Trai staff to recogise ad respod to older people s metal health eeds, ad ecourage staff to cotribute their skills ad kowledge to improvig the quality of care provided. Establish systems ad procedures to address older people s metal health eeds at all stages of a stay i hospital, from admissio through to discharge. Establish systems ad procedures to esure that members of staff have the appropriate skills ad resources to recogise, moitor ad respod to depressio i older residets. Esure that the priciple of age equality is icorporated ad upheld i all of their policies, assessmets ad improvemet activities ad prioritise the assessmet of metal health services for older people. Develop stadards to ecourage care providers to develop systems ad procedures that facilitate the idetificatio ad maagemet of metal health problems that are commo i care settigs. Require the curricula for all basic traiig programmes to iclude modules o the assessmet ad care of older people with metal health eeds. Higher educatio istitutios ad traiig bodies Professioal bodies Iclude the assessmet ad maagemet of older people s metal health eeds i all basic traiig courses, to esure the attaimet of the ecessary skills, kowledge ad attitudes to address older people s multiple health problems with care ad respect. See Recommedatio 13 from the Iquiry s first report. Develop iitiatives to improve the quality of their members practice i idetifyig ad respodig to older people s metal health eeds. Work with members ad with other professioal bodies to defie the specialist skills ad kowledge ivolved i workig with older people with metal health problems, ad educate colleagues who work with youger adults to esure that older people are ot idirectly discrimiated agaist i the services they receive. Establish programmes to develop ad stregthe leadership i workig with older people, icludig older people with metal health problems. 12

15 Chapter 1 Itroductio The UK Iquiry ito Metal Health ad Well-Beig i Later Life was established i late 2003 to ivestigate the eglect of older people s metal health i policy, practice ad research. It published its first report, Promotig Metal Health ad Well-Beig i Later Life 1, i 2006, drawig o evidece from older people, carers, orgaisatios ad professioals to make recommedatios for ways to make positive metal health ad well-beig a reality for all older people i the UK. While the majority of older people experiece good metal health ad well-beig, a sigificat miority do ot. This secod ad fial report is cocered with this group. Takig the views ad experieces of older people ad carers as its startig poit, the report makes recommedatios to a wide audiece for ways to improve services ad support for older people with metal health problems. 1.1 Why is this importat? Over a third of older people i the UK experiece symptoms of metal health problems such as depressio, axiety, delirium (acute cofusio), demetia, schizophreia, bipolar disorder, ad alcohol ad drug (icludig prescriptio drug) misuse. As the absolute umber of older people i the populatio grows, from 9.6 millio i 2005 to 12.7 millio i 2021, the umber of older people with metal health problems will also grow. Withi the ext 15 years, over six per cet of the total UK populatio, or oe i every 15 people, will be a older perso experiecig a metal health problem. 2 The impact will be felt i the direct ad idirect costs to idividuals ad their families, statutory service providers, busiesses, volutary orgaisatios, govermet ad wider society. Metal health problems i later life ca be extremely disablig, resultig i poor quality of life, isolatio, exclusio, despair ad eve premature death. A icrease i the umber of older people with metal health problems will magify these persoal costs to idividuals ad their families. It will also lead to icreased housig, health ad social care costs, with further pressure o areas such as trasport ad leisure. Demad o the workers who provide these services will be icreased. These direct costs will be compouded by idirect costs to the ecoomy i lost cotributios from older people totallig more tha 250 billio per year. People aged 50 ad over cotribute 230 billio per year, or aroud a quarter of the total UK ecoomy. 3 Their cotributios as upaid carers, gradparets ad voluteers total 24 billio per year. 4 Older people boost the ecoomy by a additioal 245 billio per year i cosumer spedig. 5 We risk losig the uquatifiable wealth of experiece ad wisdom that older people brig to our families ad commuities which helps to maitai ad improve the metal health ad well-beig of others. For example, childre of depressed parets have a 50 per cet risk of developig depressio themselves before the age of 20 6 but gradparets, who provide a average of 16 hours of child care per week, 7 have bee show to moderate the trasmissio of depressio from mothers to their childre. 8 Gradparets who are depressed themselves are much less likely to be able to have this protective ifluece. 13

16 Improvig services ad support for older people with metal health problems Every member of society will be affected i some way. Govermet will fid it difficult, if ot impossible, to carry out policy commitmets ad meet key targets. At a time whe the Govermet is recogisig society s icreasig reliace o older people s cotributios ad aimig to make the most of them, 9 the eglect of older people s metal health eeds represets a waste of huma potetial that we simply caot afford. Whe the Govermet is ecouragig charities to take a more active role i the desig ad delivery of public services, 10 we caot igore the metal health of older people, who make up 74 per cet of the voluteer workforce i health ad social services, 11 the mai areas where volutary orgaisatios are ivolved. If we cotiue to waste the opportuities preseted to us by the growig umbers of older people, we will store up problems for the future ad our fiacial ad huma resources will come uder serious strai. The good ews is that metal health problems are ot a ievitable part of ageig. May older people with metal health problems who receive appropriate support are able to lead productive ad fulfillig lives. We eed to prevet or delay the oset, recurrece ad worseig of metal health problems i later life to esure older people ad carers are able to cotribute fully to society. However, there is o time to waste. The scale of the problem is huge ad curret provisio of services ad support is isufficiet to meet curret ad future eeds. There is little sig of adequate plaig for the future, especially for people growig older with severe ad edurig metal health problems. Services are fragmeted or o-existet for may. Age discrimiatio i metal health persists. Progress is hampered by the defeatist assumptio that metal health problems are a ormal part of growig older ad that there is o effective treatmet. Workers feel overwhelmed ad usupported. Upaid carers are particularly stressed. Resposibility for the issue is blurred, with cofusio about leadership at every level. 1.2 Call to actio The Iquiry s visio is of a society where the eeds of older people with metal health problems, ad the eeds of their carers, are uderstood, take seriously, give their fair share of attetio ad resources, ad met i a way that eables them to lead full ad meaigful lives. The Iquiry believes that this ca be achieved, ad that this achievemet will beefit society as a whole. We eed a radical shift to produce decisive actio ad measurable improvemet i the lives of older people ad their carers. Actio requires creativity, imagiatio ad will. This shift is startig to happe i some places ad we kow that chage is possible. 1.3 Evidece i this report This report draws o a wide rage of evidece icludig: A comprehesive literature ad policy review commissioed by the Iquiry; 12 Evidece from older people ad carers gathered from a fieldwork study commissioed by the Iquiry which icluded iterviews with more tha 200 older people i four sites across the UK, questioaire resposes ad additioal scopig of published ad upublished research; 13 14

17 Chapter 1 Itroductio Evidece from orgaisatios ad professioals gathered from roudtable discussios, a call for practice examples, questioaire resposes ad additioal research; The kowledge, experiece, advice ad guidace of more tha 80 Board members, Govermet participats ad Advisory Group members (listed i the Ackowledgemets); The kowledge ad experiece of members of the Age Cocer Metal Health ad Well-Beig Network; ad Cosultatio with various audieces through meetigs, presetatios ad workshops. Based o this evidece, the Iquiry has idetified five mai areas for actio: Edig discrimiatio Prioritisig prevetio Eablig older people to help themselves ad each other Improvig curret services Facilitatig chage Followig Chapter 2, which outlies key facts, figures ad policy developmets, these five areas form the structure of the rest of the report (Chapters 3-7). Chapters 8 ad 9 preset the Iquiry s coclusios ad recommedatios. 15

18 Improvig services ad support for older people with metal health problems Chapter 2 Facts, figures ad policy Key poits The umber of older people with metal health problems i the UK will icrease by a third over the ext 15 years to 4.3 millio, or oe i every 15 people. Metal health problems i later life are very diverse ad there is tremedous umet eed. This chapter sets out key facts, figures ad policy o older people s metal health i the UK, which provide the cotext for the rest of this report. Older is defied as aged 65 ad over uless idicated otherwise. This defiitio is cosistet with the way services are curretly orgaised although, as we shall see i Chapter 3, this chroological age marker ca also create problems. 2.1 Prevalece A wide rage of metal health problems may affect people i later life. They iclude depressio, axiety, delirium (acute cofusio), demetia, schizophreia, bipolar disorder, ad alcohol ad drug misuse. Suicide, self-harm ad self-eglect are commo amog older people ad are ofte the result of metal health problems. May people develop metal health problems for the first time i later life, while others grow older with them. Table 1 shows the prevalece rates of differet metal health problems for older people i three settigs: the commuity (usually private households but also icludig sheltered ad extra-care housig), acute hospitals, ad residetial ad ursig care homes. For people livig i the commuity, a distictio is made betwee those who meet the cliical criteria for a formal diagosis of the problem ad those who experiece symptoms, oly some of whom will meet the cliical criteria. Table 1 also shows the gaps i curret data. May of the prevalece rates are estimates, based o small qualitative studies, or ot kow at all. 16

19 Chapter 2 Facts, figures ad policy Table 1. Percetage of people aged 65 ad over with differet metal health problems i the commuity, acute hospitals ad care homes Commuity (Cliical criteria) Commuity (Symptoms) Acute hospitals Care homes Depressio 14,15,16, Axiety 18,19,20, Delirium 22, Ukow 20 Very commo Demetia 24,25,26 5 Ukow Schizophreia 27,28, Ukow Alcohol misuse 30, Ukow 3 Ukow Drug misuse Prescriptio Ukow Ukow Ukow Illicit Ukow Ukow Ukow The umber of people aged 65 ad over i the UK will icrease by a third over the ext 15 years, from 9.6 millio i to 12.7 millio i If prevalece rates stay about the same, there will be: Approximately 3.5 millio older people with symptoms of depressio which are severe eough to warrat itervetio. 36 About 1.6 millio older people who meet the cliical criteria for a formal diagosis of depressio. 37 Nearly 1 millio older people with demetia. 38 A estimated 91,000 older people with schizophreia. 39 The actual umbers of older people with symptoms ad diagoses of depressio may be greater tha projected. The calculatios did ot take ito accout that four per cet of older people live i care homes, where depressio is much more commo. It was also assumed that the prevalece of depressio will stay stable over the ext 15 years, whe i fact there is some evidece that prevalece is icreasig. Sigificatly, populatio growth i the ext 15 years will be fastest amog the groups of older people who are most likely to suffer from metal health problems. These iclude people aged 85 ad over, who are early twice as likely to have symptoms of depressio 40 ad four times more likely to have demetia tha people aged 65 ad over; 41 older people from ethic miority groups 42 ad older prisoers. 43 The over- 85 populatio will icrease by 50 per cet over the ext 15 years, from 1.2 millio i 2005 to 1.8 millio i 2021, 44 compared with the 30 per cet icrease i the over-65 populatio. I just half that time, the older black ad miority ethic (BME) populatio will icrease by up to 170 per cet. 45 The umber of prisoers aged 60 ad over has icreased by 300 per cet i the last 10 years ad is expected to cotiue to icrease i the future

20 Improvig services ad support for older people with metal health problems 2.2 Depressio Depressio is the most commo metal health problem i later life. It is best described as a cotiuum of symptoms, ragig from a major, life-threateig illess to a milder, more chroic coditio. 47 Symptoms iclude low mood, loss of iterest or pleasure i thigs the perso usually ejoys, lack of eergy, sleep ad appetite disturbaces, poor self-esteem ad irritability, difficulty cocetratig, itese feeligs of sadess, guilt, despair, worthlessess ad hopelessess, ad recurret thoughts of death or suicide. Up to 25 per cet of people aged 65 ad over livig i the commuity have symptoms which are severe eough to warrat itervetio. 48 Symptoms of depressio are more commo i wome tha me. Symptoms of depressio icrease with age. They affect 20 per cet of people aged 65 to 69, risig to 40 per cet of people aged 85 ad over. 49 Of the 25 per cet of older people who have symptoms of depressio, oly half (10 to 15 per cet of all older people) meet the cliical criteria for a diagosis of depressio. A diagosis of major (severe) depressio requires that a perso has had five of a possible ie specified symptoms for at least two weeks. A diagosis of mior (mild) depressio is made whe a perso has had two of six possible symptoms, ad depressed mood, almost every day for at least two years. Two per cet of older people livig i the commuity meet the criteria for major depressio ad 11 per cet have mior depressio. 50 Mior depressio becomes more commo ad major depressio becomes less commo with age. Depressio i later life is thus more chroic, with loger episodes ad shorter remissio periods, compared with depressio i earlier life. 51 The other 10 to 15 per cet of older people who have symptoms but do ot meet the cliical criteria for a diagosis are described as havig sub-threshold depressio. Policy documets usually cite 10 to 15 per cet as the prevalece rate for late life depressio, but there are compellig reasos to pay more attetio to all 25 per cet of older people who have depressive symptoms: Sub-threshold depressio icreases the risk of developig major depressio. 52 Sub-threshold depressio causes just as much sufferig ad may eve lead to greater physical declie tha cliical depressio. 53 It has similar impact o icreased use of services, ecoomic costs ad risk of death. Sub-threshold depressio is just as treatable as cliical depressio. 54 We should be cocered with helpig all those who might beefit from itervetio, rather tha just those who meet cliical criteria which may i fact be too arrow to reflect the breadth of huma experiece. 55 Focusig o people s experieces of symptoms is a more perso-cetred ad less service-cetred approach to treatmet. 18

21 Chapter 2 Facts, figures ad policy Depressio has a major impact o older idividuals ad their families: It icreases the risk of physical health problems like heart disease, diabetes ad stroke. 56 It also slows recovery from illess, icreases the risk of readmissio to hospital after discharge 57 ad icreases the risk of premature death. 58 It icreases the risk of beig a victim of elder abuse. Older people with depressio are more tha three times more likely to be victims of elder abuse tha those without depressio. 59 It is the leadig cause of suicide i older people. Older people with symptoms of depressio are 23 times more likely to take their ow lives tha those without symptoms. 60 Depressio is more commo i care settigs. At least 30 per cet of older people i acute hospitals ad 40 per cet of older people i care homes meet the cliical criteria for a diagosis of depressio. May more exhibit symptoms. Depressio i older people is uder-diagosed ad uder-treated. 61 Two-thirds of older people with depressio have ever discussed it with their GP. Of the third that have raised it, oly half (or about 15 per cet of all older people with depressio) were diagosed ad are receivig treatmet. Oly six per cet of older people with depressio receive specialist metal health care. The ecoomic costs of depressio i later life are ot kow. 2.3 Axiety Axiety is closely liked to depressio i later life ad is a uder-researched area i its ow right. The differet types iclude geeralised axiety disorder, paic, phobias ad obsessive-compulsive disorder. Symptoms iclude worry, apprehesio, paic attacks, irritability, restlessess, difficulty cocetratig, muscle tesio ad sleep disturbace. Betwee 2 ad 4 per cet of older people livig i the commuity meet the cliical criteria for a formal diagosis of axiety. 62 Betwee 10 ad 24 per cet of people aged 65 ad over livig i the commuity have symptoms. 63 Sub-threshold axiety causes just as much sufferig as cliical axiety ad should therefore be of equal cocer. Axiety is more commo i wome tha i me. Most older people sufferig from axiety developed it whe they were youger ad have grow older with it. Few studies have examied the impact of late life axiety o idividuals ad their families, the extet of umet eed ad the ecoomic costs. 19

22 Improvig services ad support for older people with metal health problems 2.4 Suicide ad self-harm Globally, suicide rates icrease with age. 64 I most coutries, older me have the highest suicide rates of all age groups. 65 I the UK: 66 Me aged 75 ad over had the highest suicide rates of all me util Now me aged have the highest rates (19.0 per 100,000 populatio). Me aged 75 ad over have the secod highest rates (18.4 per 100,000 populatio). Rates of suicide i older me are highest i Scotlad (19.8 per 100,000 populatio) ad lowest i Norther Irelad (8.8 per 100,000 populatio). Wome aged 75 ad over, ad wome aged 45-74, have the highest ad secod highest rates of suicide of all wome (7.0 ad 6.9 per 100,000 populatio). Rates of suicide i older wome are similar across Scotlad, Eglad ad Wales but lower i Norther Irelad (2.0 per 100,000 populatio). These rates mea that 316 me ad 198 wome aged 65 ad over took their ow lives i These umbers are almost certaily uderestimates sice the cause of death for older people who die by suicide is ofte ascribed to kow existig physical illesses o death certificates. Suicide i later life is marked by distict characteristics. Older people make fewer suicide attempts tha youger people but are more successful at takig their ow lives. 68 Oe i four attempts by older people results i completed suicide, compared with oe i 15 attempts for the geeral populatio. Older people, especially me, ted to use more lethal methods such as firearms ad hagig. The most commo method used by older me is hagig. Older wome ofte die by drug overdose. Older people are more likely to be frail ad more likely to live aloe tha youger people. They are less likely to recover from a suicide attempt ad less likely to have someoe itervee before or durig the evet. Older people who take their ow lives are more likely tha youger people to have see their GP i the previous six moths, ad more likely to preset symptoms of physical health problems, while youger people were more likely to preset symptoms of metal health problems. 69 Depressio is the leadig cause of suicide i older people. Betwee 71 ad 95 per cet of older people who die by suicide have a diagosable metal health problem at time of death. 70 Nearly half of older people who take their ow lives visit their GP i the moth before suicide

23 Chapter 2 Facts, figures ad policy Deliberate self-harm (DSH) by older people is more closely associated with suicide tha i youger people. DSH by older people should be cosidered failed suicide uless proved otherwise. 72 Niety per cet of DSH by older people ivolves a overdose of medicatio such as bezodiazepies or other sedatives, paracetemol ad atidepressats. 73 Over a third of older people who self-harm have severe depressio while 10 per cet are depedet o alcohol Delirium (acute cofusio) Delirium or acute cofusio is marked by sudde oset of cofusio, disorietatio, memory impairmet, agitatio ad eve delusios ad halluciatios. The causes are almost always physical i ature, icludig ifectio ad dehydratio. Prevalece icreases rapidly with age. Delirium affects betwee oe ad two per cet of people aged 65 ad over livig i the commuity ad up to 14 per cet of people aged 85 ad over. 75 Delirium is very commo i care settigs. Most research has bee doe o delirium i acute hospitals. Half of delirium cases i older people develop after admissio to geeral hospital. 76 Delirium develops i up to 50 per cet of older people who have operatios. 77 It persists i about a third of hospital patiets. 78 It is five times more commo i older people who have demetia. 79 Delirium has sigificat impact o older people s metal ad physical health. It is associated with icreased cogitive declie; 80 icreased risk of medical complicatios like ifectios, falls ad icotiece; 81 ad icreased rates of death, both i hospital ad after discharge. 82 Older people who experiece delirium are less likely to recover from illess ad more likely to eter care homes. 83 I oe study, 83 per cet of older people who still had delirium whe they were discharged from hospital had etered a ursig home or died withi a year, compared with 68 per cet of older people who had had delirium ad recovered ad 42 per cet of older people who had ever had delirium. 84 With proper care, delirium ca be preveted i a third of hospital cases 85 yet it remais uder-diagosed ad uder-treated. It is udiagosed i over half of older hospital patiets. 86 Oe study foud that 84 to 95 per cet of cases of delirium i older people were udetected by attedig physicias i geeral medical uits

24 Improvig services ad support for older people with metal health problems The ecoomic costs of delirium are very high: O average, it doubles the legth of hospital stay 88 ad costs a additioal $2500 ( 1275) per hospital patiet Demetia Demetia is a term for a rage of progressive, termial diseases icludig Alzheimer s disease, vascular demetia, froto-temporal demetia (icludig Pick s disease) ad demetia with Lewy bodies. All facts ad figures are draw from the Alzheimer s Society report, Demetia UK (2007), 90 uless idicated otherwise. Prevalece icreases rapidly with age. Rates double every five years from age 30 oward. Five per cet of people aged 65 ad over have demetia, risig to 20 per cet of people aged 80 ad over ad 33 per cet of people aged 95 ad over. Two per cet of all people with demetia develop it before the age of 65. Two per cet of people with demetia are from black ad ethic miority (BME) groups. People with Dow s sydrome are four times more likely to have demetia ad to develop it at earlier ages. Three per cet of people with Dow s sydrome i their 30s have demetia, risig to 40 per cet i their 50s ad 55 per cet i their 60s. 91 Nearly two thirds (64 per cet) of older people with demetia are cared for i the commuity, mostly by upaid carers. More tha oe third (36 per cet) of older people with demetia live i care homes. Demetia affects per cet of people who live i residetial, ursig ad elderly metally ifirm (EMI) homes. Demetia has terrible cosequeces for older people ad their frieds ad families: It accouts for more years of disability tha almost ay other coditio, icludig stroke, cardiovascular disease ad cacer. It accouts for 10 per cet of deaths i me over 65, ad 15 per cet of deaths i wome over 65. Delayig oset by five years would halve the umber of deaths i the UK due to demetia to 30,000 a year. Up to half of people with demetia also have depressio. 92 Approximately per cet have major depressio ad per cet have mior or sub-threshold depressio. 93 People with both demetia ad depressio have higher rates of disability ad declie ad higher rates of hospitalisatio tha people with demetia aloe. 94 A third of people who care for a older perso with demetia have depressio. 95 Yet demetia is ofte udiagosed ad uder-treated. Fewer tha half of people with demetia will ever receive a diagosis

25 Chapter 2 Facts, figures ad policy The ecoomic costs of demetia are extremely high 97 : I the UK, demetia costs 17 billio per year. Accommodatio costs equal 7 billio (41 per cet of the total). Frieds ad family provide upaid care worth 6 billio (36 per cet) ad health ad social care costs add up to 4 billio (23 per cet). Demetia costs the health ad social care ecoomy more tha cacer, heart disease ad stroke combied. 98 The balace of health ad social care spedig o demetia differs from other metal health problems. The NHS accouts for 35 per cet ad local authorities for 65 per cet of health ad social care spedig o demetia services. I cotrast, the NHS accouts for 80 per cet ad local authorities 20 per cet of spedig o adult metal health services. 99 Demetia services are ot judged to be deliverig value for moey Schizophreia ad other severe metal health problems Schizophreia, bipolar disorder ad other severe metal health problems i later life are a uder-researched area. Relatively few older people suffer from these coditios but those who are affected i later life have very complex eeds. People who have grow older with schizophreia may be graduates of asylums or log-stay metal hospitals, ad ow livig i specialist care homes. They may suffer from side effects of log-term use of ati-psychotic drugs. The prevalece of schizophreia ad bipolar disorder does ot appear to icrease with age. About oe per cet of people aged 65 ad over i the commuity have psychotic disorders. About 0.5 per cet have schizophreia. 101 Three-quarters of older people with schizophreia developed it i their tees or 20s ( early oset ) ad have grow older with it, 15 per cet developed it betwee age ( late oset ) ad 10 per cet developed it for the first time after 65 ( very late oset ). 102 The majority of older people with schizophreia are wome. Me with early oset schizophreia have very poor outcomes ad are less likely to survive ito later life. Wome predomiate amog those with late or very late oset schizophreia. Schizophreia ad bipolar disorder ofte occur with other metal health problems. Co-morbidity is associated with poorer outcomes. Sixty per cet of older people with schizophreia have major depressio durig the course of their illess. 103 A sigificat percetage, especially of me, also have alcohol ad drug problems. Thirty per cet of older people with bipolar disorder have other metal health problems: ie per cet have substace misuse problems, five per cet have post traumatic stress disorder, 10 per cet have axiety ad five per cet have demetia, i additio to bipolar disorder