Alzheimer Europes recommendations and examples of good practice linked to the provision of social support to people with dementia

and carers Third draft 30 July 2008

Deadline for responses: 15 August 2008

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

CONTENTS

!NT"O#$CT!ON %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%& ' E(EC$T!)E S$**A"+%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%, & -ENE"A. "ECO**EN#AT!ONS%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%/ 3.1 Ethi al! legal and finan ial issues ..................................................................................."
3.1.1 Dignity, autonomy and social inclusion .........................................................................................................7 3.1.2 Living at home, safety issues and preventing abuse ....................................................................................8 3.1.3 The planning, funding and organisation of services and support.................................................................. 3.1.! "inancial support to people #ith dementia and carers................................................................................11

3.2 #eneral fra$e%or& for are and support.......................................................................11

3.2.1 The need for a fle$ible approach ................................................................................................................12 3.2.2 The rehabilitative approach .........................................................................................................................13

3.3 'uita(ility! a

essi(ility and (arriers to o(taining support! ser)i es and are ...............1*

, S0EC!1!C SE")!CES AN# S$00O"T 1O" 0EO0.E 2!T3 #E*ENT!A AN# CA"E"S %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% 4 +.1 ,utpatient ser)i es and self-help .................................................................................18 +.2 'e$i-residential are and respite for arers..................................................................21 +.3 .esidential are ............................................................................................................23 5 E(A*0.ES O1 -OO# 0"ACT!CE %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%'5 6 -.OSSA"+7 AC8NO2.E#-E*ENTS
AN# 9!9.!O-"A03+

%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%&

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

!ntroduction
There are $any different for$s of de$entia of %hi h Al/hei$er0s disease is the $ost o$$on. De$entia is not a tually a disease (ut rather a set of sy$pto$s 1or a syndro$e in $edi al ter$s2. 3t in)ol)es progressi)e da$age to the (rain and auses a gradual deterioration of people0s fun tional apa ity as %ell as hanges in their roles! responsi(ilities and so ial relations. All these hanges and losses affe t the person0s identity and sense of self. De$entia affe ts other people too i.e. relati)es and others in the person0s so ial net%or&. As the disease progresses! effe ts (e o$e in reasingly e)ident and the person %ith de$entia (e o$es $ore dependent on other people for help and support. There are urrently o)er * $illion people %ith de$entia in the European 4nion1 and it is predi ted that this nu$(er %ill dou(le in the ne5t 20 years2 along %ith the ageing of the population. There are also $illions of arers! often elderly people %ith li$ited resour es! %ho are for people %ith de$entia at ho$e to the (est of their a(ility %ith )arying le)els of support fro$ the 'tate. 3n so$e ountries! support fro$ the 'tate for people %ith de$entia and arers 1e.g. in the for$ of ser)i es! allo%an es and are stru tures2 is 6uite %ell de)eloped %hereas in others! it is )irtually non-ine5istent. Al/hei$er Europe has arried out a sur)ey in the fra$e%or& of the 3-year E7-funded 8Euro7oDe9 pro:e t to in)estigate the &ind of so ial support3 a)aila(le to people %ith de$entia and arers in Europe and to %rite re o$$endations to poli y$a&ers on the (asis of its findings. The Euro7oDe sur)ey %as arried out in 200" %ith the help of its national $e$(er asso iations and a fe% e5ternal e5perts. 3ndi)idual national reports+ %ere produ ed as %ell as a o$parati)e do u$ent5 of the o)erall findings. These findings refle ted the general a)aila(ility of ser)i es and support at that ti$e; they %ere not a $easure of the nu$(er of indi)idual ser)i es or the 6uality of su h ser)i es. <e)ertheless! respondents pro)ided additional infor$ation a(out pro(le$s lin&ed to the pro)ision of su h ser)i es e.g. (arriers to a ess! o)erall a)aila(ility! ho% ser)i es are funded and the e5tent to %hi h a)aila(le ser)i es are suited to the spe ifi needs of people %ith de$entia. 3t should (e noted that the responses to the sur)ey refle ted the )ie%s of representati)es of Al/hei$er asso iations and in so$e ases e5ternal e5perts %ho %ere ne)ertheless lin&ed to the asso iations. As su h! it ould (e argued that these %ere su(:e ti)e )ie%s (ut on the other hand! the Al/hei$er asso iations and asso iated e5perts are ideally pla ed to understand the &ind of support that people %ith de$entia and arers need and to onsider these needs in the light of the a)aila(le ser)i es. =e re ognise that poli y $a&ers in Europe are at )arious stages in the de)elop$ent of good 6uality so ial support to people %ith de$entia and arers. These re o$$endations should (e understood as representing an opti$al situation %hi h poli y $a&ers should ai$ to a hie)e. This do u$ent ontains an e5e uti)e su$$ary of the re o$$endations to i$pro)e the pro)ision of so ial support to people %ith de$entia and arers. This is follo%ed (y a $ore
1 2

Al/hei$er Europe 1200*2! De$entia in Europe >ear(oo& 200*! Al/hei$er Europe ?erri et al. 120052! #lo(al pre)alen e of de$entia: a Delphi onsensus study! the @an et! )ol. 3**! 2112-211" 3 Alease refer to 'e tion 5 for a (rief glossary ontaining definitions of so ial support and arers and for a list of the $e$(ers of the %or&ing group. + Al/hei$er Europe 1200"2! De$entia in Europe >ear(oo& 200"! Al/hei$er Europe 5 Al/hei$er Europe 120082! 7o$parati)e report on the le)el of so ial support pro)ided to people %ith de$entia and their arers in Europe! Al/hei$er Europe

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

o$plete presentation of the i$portant issues %hi h %e feel should (e onsidered %hen pro)iding su h support and finally a olle tion of e5a$ples of good pra ti e.

'

Executive summar:

%verriding goals and principles 1. #o)ern$ents should set up national a tion plans for de$entia are and set aside the ne essary funds to i$ple$ent the$. 2. #o)ern$ents should ensure that people %ith de$entia and arers ha)e e6ual a ess to the so ial support 1i.e. support! are! ser)i es and fa ilities2 they need. 3. Beasures should (e ta&en to i$pro)e the 6uality of so ial support! re$o)e (arriers to a essing it and ensure a suffi ient supply of ser)i es in all geographi al areas. +. #o)ern$ents should ta&e $easures to fa ilitate independent li)ing and the so ial integration of people %ith de$entia. 5. #o)ern$ents should pro$ote the early diagnosis of de$entia. *. 3n addition to ad)an e state$ents for $edi al treat$ent! go)ern$ents should reate possi(ilities for people to e5press in ad)an e their %ishes on erning their future are and so ial support! and to appoint a trust%orthy person to spea& on their (ehalf. ". #o)ern$ents should de)elop a$paigns and $easures to o$(at the stig$atisation and a(use of people %ith de$entia. &especting the rights and dignity of people #ith dementia 8. 'er)i es and support to people %ith de$entia should (e pro)ided in su h a %ay as to $aintain or enhan e their autono$y and dignity! %hilst at the sa$e ti$e (alan ing this %ith the need to ensure their safety. C. The needs! %ishes! rights! prote tion and indi)iduality of ea h person %ith de$entia should (e at the entre of any so ial support pro)ided. 10. Aeople %ith de$entia should (e onsulted and infor$ed a(out any so ial support they re ei)e and e)ery effort should (e $ade to o(tain their onsent. 11. #o)ern$ents should ensure that regulations relating to the pro)ision of so ial support to people %ith de$entia are enfor ed. 12. Aeople %ith de$entia should not (e su(:e ted to restri ti)e or oer i)e $easures. 3nstead! alternati)e $eans of ensuring safety or pro)iding are should (e de)eloped. 'tate funding and organisation of social support 13. The organisation and finan ing of health are and so ial support should (e oordinated in su h a %ay as to ensure a sea$less pro)ision of are! support and ser)i es to people %ith de$entia and effe ti)e oordination (et%een health are and so ial are syste$s and pro)iders. 1+. 3n order to ensure a suffi ient nu$(er of trained health are professionals and pro)iders of good 6uality so ial support to people %ith de$entia! go)ern$ents should in)est in training and pro)ide in enti)es to attra t professionals to this do$ain. 15. Beasures should (e ta&en to li$it the potential finan ial (urden of de$entia on arers

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

and people %ith de$entia. This $ight in lude o$pensation for loss of in o$e! assistan e %ith osts in urred! prote tion of pension fund ontri(utions and ta5 dedu tions for osts lin&ed to are et . 1*. Aeople %ith li$ited resour es should (e gi)en the finan ial assistan e ne essary to a ess the so ial support they need (ut a ess should not (e li$ited solely to people on a lo% in o$e. 1". Al/hei$er Asso iations! <#,s! harita(le organisations and )olunteer net%or&s should (e pro)ided %ith appropriate support fro$ the 'tate for the ser)i es they pro)ide. (nsuring e)ual access to social support 18. Aeople %ith de$entia should ha)e a ess to appropriate and good 6uality so ial support if and %hen needed! irrespe ti)e of the type or stage of de$entia! the spe ifi diagnosis! geographi al lo ation! li)ing situation! age or any other $eans of dis ri$ination. 1C. The spe ifi needs and li)ing situation of ertain groups of people %ith de$entia should (e re ognised and appropriate support pro)ided e.g. those %ith al ohol dependen y or learning disa(ilities! li)ing alone or in rural areas! on a lo% in o$e andDor fro$ $inority groups et . 20. Aeople %ith de$entia should ha)e a ess to a general infor$ation ser)i e to dire t the$ to%ards a)aila(le so ial support! assistan e to help the$ apply for it and an ad)o ate to infor$ the$ of their rights and ensure that their rights are respe ted. 21. 3n ea h o$$unity! there should (e a 8de$entia onta t person9 %ho is a)aila(le to ans%er 6uestions a(out the disease and the &inds of ser)i es a)aila(le. *eneral issues surrounding the provision of social support 22. A reha(ilitati)e approa h to so ial support for people %ith de$entia should (e de)eloped and pro)ided on a $ultidis iplinary (asis in olla(oration %ith people %ith de$entia and arers 1please refer to se tion 2.2 of this report for further details2. 23. E)ery person %ith de$entia should ha)e a de$entia are oordinator! regular assess$ent of hisDher needs and appropriate ase $anage$ent. 2+. 'o ial support should (e pro)ided %hen needed and not solely %hen the person %ith de$entia has rea hed a spe ifi le)el of general disa(ility. 25. 7arers should (e entitled to a separate assess$ent of their needs! resour es and %illingness to pro)ide are. 2*. De$entia should (e a o$ponent part of do tors0 undergraduate training. 2". 7ontinuous training in de$entia are should (e pro)ided to all sta&eholders and at e)ery le)el of ser)i e pro)ision fro$ de ision $a&ing to pra ti e. 28. 7are and ser)i e pro)iders should ha)e a ess to $edi al e5pertise %hene)er needed! irrespe ti)e of %here are is pro)ided. 2C. A o$(ined pre)enti)e and urati)e approa h should (e adopted %hen appropriate. +ssues related to the provision of home care,outpatient services and support 30. 'o ial support should (e pro)ided if and %hen re6uired! ta&ing into a ount the %ishes and usual daily routine of the person %ith de$entia and the possi(le need for

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

are at any ti$e of the day or night. 31. Aeople %ith de$entia should ha)e a ess to infor$ation! ounselling! psy hoedu ation! appropriate psy hologi al support! different &inds of therapies and $eaningful a ti)ities! and training in oping %ith a ti)ities of daily li)ing. 32. 7arers should ha)e a ess to infor$ation! ounselling! psy hoedu ation! appropriate psy hologi al support and training! as %ell as (erea)e$ent ounselling. 33. 7hildren and adoles ents should ha)e a ess to spe ially adapted support. 34. A %ide range of ser)i es! %hi h respond to the spe ifi needs of the person %ith de$entia! should (e a)aila(le in luding! for e5a$ple! assistan e %ith personal are and hygiene! house%or&! $o(ility! eating and drin&ing! ta&ing $edi ation! shopping! laundry! transport and ho$e $aintenan e. 35. The i$portan e of so ial onta t! e5er ise and $ental sti$ulation to help $aintain e5isting apa ity should (e re ognised and appropriate support pro)ided. 3*. Day are and o asional night are in entres should (e a)aila(le for people %ith de$entia. 'taff in su h entres should (e suita(ly trained in de$entia are. 3". Aeople %ith de$entia should ha)e a ess to afforda(le assisted te hnology and ho$e adaptations suited to their parti ular needs and apa ities. 38. 7arers should ha)e regular a ess to afforda(le respite during the day! in the e)ening! at night and for )arying periods of ti$e. 3C. A repla e$ent arer 1or an allo%an e to pay for a repla e$ent arer2 should (e pro)ided during this period in the ho$e or in a entre. Atte$pts should (e $ade to ensure that this auses the least distur(an e possi(le to the person %ith de$entia. &esidential and palliative care +0. ?le5i(ility in the pro)ision of short or long-ter$ residential are should (e en ouraged in order to respe t autono$y! $a5i$ise independent li)ing and respond to hanging needs and te$porary or risis situations. E$ergen y %ards of hospitals are not suita(le pla es for su h are. +1. Beasures should (e ta&en to ensure that e)ery person %ith de$entia has a ess to afforda(le and good 6uality long-ter$ residential are %hen needed. 3f this is not possi(le! appropriate te$porary $easures should (e found. +2. 'e$i-residential and alternati)e for$s of residential are should (e de)eloped %hi h $a5i$ise the potential for independent li)ing. +3. Aalliati)e are ser)i es at ho$e! in entres and pro)ided (y $o(ile palliati)e are tea$s should (e a)aila(le to people %ith de$entia %hen needed. A ess should not (e restri ted to those %ho also ha)e a diagnosis of an er. 44. .e o$$endations on issues spe ifi ally related to end-of-life and palliati)e are an (e found in Al/hei$er Europe0s 8guidelines on the good end-of-life are of people %ith de$entia9 120082.

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

&
&%
&% %

-eneral "ecommendations
Ethical7 legal and financial issues
#ignit:7 autonom: and social inclusion

?irst and fore$ost! people %ith de$entia are friends! relati)es! neigh(ours and fello% $e$(ers of so iety. The fa t that they ha)e a spe ifi $edi al ondition is se ondary. They ha)e an inherent dignity! )alue and personhood %hi h re$ains %ith the$ throughout the %hole ourse of the disease and should (e respe ted at all ti$es. The gradual loss of apa ity $a&es it diffi ult for people %ith de$entia to $aintain their pla e and a ti)e parti ipation in so iety i.e. in the pri)ate sphere! %ithin the o$$unity and in the %or&pla e. 7arers $ay also e5perien e so ial e5 lusion (ased on the effe ts of de$entia on their lo)ed ones. Eo%e)er! $aintaining so ial onta t and re$aining a ti)e helps preser)e their autono$y and physi al and $ental %ell-(eing for longer! $ini$ise the need for assistan e and pre)ent so ial isolation and depression. The real (arriers to so ial in lusion and e6ual iti/enship are often dis ri$inatory attitudes and pro edures! as %ell as a la & of understanding. These are issues %hi h an (e addressed. There is therefore an urgent need to raise a%areness of de$entia and ta&e $easures to o$(at stig$atisation! negati)e stereotyping! dis ri$ination and indifferen e. =hen pro)iding so ial support and ser)i es to people %ith de$entia it is i$portant to respe t their right to self-deter$ination: This $eans ensuring that their %ishes are ta&en into onsideration and their onsent o(tained. As de$entia progresses! it (e o$es in reasingly diffi ult to o(tain fully infor$ed onsent fro$ people %ith de$entia. Eo%e)er! it is al%ays possi(le to in)ol)e the$ in the de ision-$a&ing pro ess to so$e e5tent! &eeping the$ infor$ed! as&ing andDor finding out fro$ others a(out their preferen es and ta&ing into a ount pre)iously e5pressed %ishes.

.e o$$endations for 3.1.1 Dignity! autono$y and so ial in lusion 1. 'er)i es and support to people %ith de$entia should (e pro)ided in su h a %ay as to $aintain or enhan e their autono$y and dignity. 2. 3n addition to ad)an e state$ents for $edi al treat$ent! go)ern$ents should pro$ote possi(ilities for people to e5press their %ishes on erning are and so ial support! and to designate in ad)an e a trust%orthy person to spea& on their (ehalf! %hilst they still ha)e suffi ient apa ity to do so. 3. Aeople %ith de$entia should (e infor$ed of these possi(ilities %hen the diagnosis is dis losed in ase they ha)e not already $ade su h arrange$ents and still ha)e suffi ient apa ity to do so. +. Falid 7onsent should (e sought fro$ the person %ith de$entia. As standard onsent pro edures are li&ely to (e unsuita(le in $any ases! alternati)e and no)el approa hes should (e sought.

"

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

5. Diffi ulties o$$uni ating %ishes or understanding should not (e $ista&en for i$pli it onsent or indifferen e. *. As so$e for$s of support $ay also ha)e onse6uen es 1e.g. finan ial! pra ti al or ti$e-%ise2 for arers andDor (e pro)ided in the arer0s ho$e! their %ishes and rights should also (e onsidered and as far as possi(le respe ted. ". 7onsent issues $ust should (e handled )ery arefully in order to a)oid a(use andDor $easures %hi h are disproportionate to the need. 8. =hilst respe ting the pri)a y of people %ith de$entia! people pro)iding ser)i es should (e )igilant for signs of possi(le diffi ulty! a(use or negle t e5perien ed (y people %ith de$entia! and report this to their super)isors. C. The person %ith de$entia and hisDher needs should (e at the entre of any support pro)ided. 3n addition! hisDher %ishes and indi)iduality should al%ays (e ta&en into onsideration. 10. Beasures should (e ta&en to pro$ote the early diagnosis of de$entia. 11. 7a$paigns to o$(at stig$a should (e de)eloped.

&% %'

.iving at home7 safet: issues and preventing a;use

Ensuring that people %ith de$entia an re$ain in their o%n ho$es for as long as they %ish to do so 1and insofar as it is possi(le for the$2 is (e o$ing a priority for $any go)ern$ents as they gradually realise the positi)e effe t that this an ha)e on people0s physi al and $ental health and %ell-(eing! as %ell as the fa t that it is usually less e5pensi)e for the state. <e)ertheless! people %ith de$entia $ust also ha)e the option of afforda(le and suita(le residential are. Ena(ling people to ontinue li)ing at ho$e re6uires areful attention to o(taining the right (alan e (et%een autono$y and safety! to the rights and needs of arers %ho are dire tly on erned (y this hoi e and to the ris& of possi(le isolation. As the needs of the person %ith de$entia hange! the ho$e $ay (e o$e ill-adapted to their needs and render the tas& of aring $ore diffi ult. ?ortunately! assisted te hnology and adaptations to the ho$e an (e a tre$endous help and $ay e)en delay the need for residential are. Aeople %ith de$entia are at in reased ris& of different for$s of a(use 1e.g. )er(al! physi al! finan ial and psy hologi al a(use as %ell as negle t2 due to their progressi)e loss of apa ity! o$$uni ation diffi ulties and in reasing dependen e on others. A(use an o ur in any setting (ut $ay (e $ore diffi ult to dete t in the ho$e setting and for people %ith de$entia li)ing alone.

.e o$$endations for 3.1.2 @i)ing at ho$e! safety issues and pre)enting a(use 1. Beasures should (e ta&en to ensure that people %ith de$entia are a(le to ontinue li)ing in their ho$es for as long as they %ish and it %ould (e reasona(ly possi(le for the$ to do so. 2. Beasures should (e ta&en to ensure that ouples an arry on li)ing

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

3.

+. 5.

*.

". 8.

C. 10.

11.

12.

together if they %ish to do so e.g. (y in reased ho$e are ser)i es or esta(lish$ents %hi h a ept ouples. This should not (e li$ited to $arried ouples. The right (alan e (et%een safety and autono$y $ust (e as ertained (y $eans of an ongoing e)aluation pro ess o)ering autono$y and safety issues. The i$portan e of $aintaining so ial net%or&s should (e re ognised and $easures ta&en to try to pre)ent so ial isolation. Transport for pra ti al and so ial purposes should (e pro)ided or su(sidised. This should e5tend to arers a o$panying a person %ith de$entia. Aeople in the early stage of de$entia should (e pro)ided %ith indi)idualised training in $anaging e)eryday tas&s and de)eloping oping strategies in order to enhan e their autono$y and prote t the$ fro$ a idents and a(use. The spe ifi needs of people %ith de$entia li)ing alone! espe ially %ith regard to safety issues! should (e onsidered. The de)elop$ent of afforda(le assisted te hnology! adapted to the needs of people %ith de$entia! and a ess to afforda(le ho$e adaptations should (e en ouraged as a $eans to pro$ote autono$y and safety. 'uita(ly adapted tele-$onitoring syste$s should (e o$pletely funded (y the state in the ase of people %ith de$entia li)ing alone. Beasures should (e ta&en to ensure that ethi al issues lin&ed to the use of assisted te hnology are al%ays ta&en into onsideration and that assisted te hnology is suited to the needs of ea h indi)idual user. 'e$i-residential or alternati)e for$s of residential are should (e de)eloped %hi h $a5i$ise the potential for independent li)ing e.g. sheltered housing! group ho$e li)ing arrange$ents and (oarding. .estri ti)e or oer i)e $easures should not (e used and instead alternati)e $eans of ensuring safety or pro)iding are adopted.

&% %&

The planning7 funding and organisation of services and support

The planning! funding and organisation of rele)ant are and support for people %ith de$entia is often insuffi ient and inappropriate (ut is (e o$ing a priority for $any go)ern$ents as the nu$(er of people %ith de$entia steadily in reases. 'o$e ha)e e)en $ade de$entia are a politi al priority and set up a tion plans and poli ies %ith the appropriate funding to address a )ariety of issues lin&ed to support! ser)i es! fa ilities and resear h. The %ay that so ial support is organised is also of ut$ost i$portan e. Aeople %ith de$entia need afforda(le so ial support and ser)i es %hi h %ere designed %ith their spe ifi needs in $ind and %hi h are adapted to their indi)idual situation and ondition. A fe% ountries ha)e long-ter$ are insuran es or allo%an es %hi h are spe ifi ally designed to address the needs of people %ho ha)e long-ter$ are needs e.g. (ased on disa(ilities! old age or hroni onditions su h as de$entia. There are of ourse other %ays to fund and organise so ial support to people %ith de$entia. =hi he)er syste$ is in use! it $ust (e lear

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

%ho! or %hi h! authority is responsi(le for ea h type of support. The o(ligation to pro)ide so ial support to elderly! disa(led or )ulnera(le adults is often laid do%n in la% and so$eti$es delegated to lo al $uni ipalities. Eo%e)er! in pra ti e! $any people %ith de$entia do not re ei)e the support they need as la%s are not enfor ed! funds for support are la &ing andDor there is poor oordination (et%een the different go)ern$ent authorities and le)els.

.e o$$endations for 3.1.3 The planning! funding and organisation of ser)i es and support 1. 3n order to $eet the need for de$entia are! %hi h is set to in rease dra$ati ally in the ne5t fe% de ades! go)ern$ents should set up national a tion plans for de$entia are and set aside the ne essary funds to i$ple$ent the$. 2. The organisation and finan ing of health are and so ial are should (e (etter oordinated so as to ensure a sea$less pro)ision of are! support and ser)i es to people %ith de$entia. 3. Beasures should (e ta&en to ensure effe ti)e oordination (et%een health are and so ial are syste$s and pro)iders. +. #o)ern$ents should ensure that regulations and la%s relating to people0s rights to assess$ent andDor appropriate are are respe ted and enfor ed. 5. Appropriate $easures should (e ta&en to ensure that $uni ipalities and other authorities pro)ide the support and ser)i es that are needed. *. 'er)i es should (e pro)ided %hi h respond to the spe ifi needs of people %ith de$entia and not those of another group e.g. the elderly or the disa(led! irrespe ti)e of ho% the ser)i es are funded 1i.e. a ording to age or disa(ility2. ". 3t should (e $ade lear %hi h regulations go)erning a ess to support and ser)i es apply to people %ith de$entia. 3f this is lin&ed to the elderly! disa(led or other groups! as it is in so$e ountries! the riteria go)erning a ess should (e suffi iently %ide as to in lude people %ith de$entia. 8. The i$portant role of Al/hei$er Asso iations! <#,s! harita(le organisations and )olunteer organisations in pro)iding ser)i es and support to people %ith de$entia and arers should (e re ognised. C. 'u h organisations of re ognised )alue should (e pro)ided %ith the appropriate funding fro$ the 'tate to ontinue their a ti)ities. 10. #o)ern$ents should en ourage donations to su h organisations e.g. (y granting ta5 dedu tions for donations. 11. Efforts should (e $ade to pro)ide sta(le funding for )arious for$s of support. 12. There should (e a spe ial ti$e s hedule or net%or& for $edi al ser)i es for people %ith de$entia and their arers (e ause people %ith de$entia

10

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

ha)e diffi ulty %aiting for hours to see a general pra titioner and the arer has little ti$e as heDshe often pro)ides are on a full-ti$e (asis. 13. Beasures should (e ta&en to redu e delays in o(taining an appoint$ent %ith a spe ialist.

&% %,

1inancial support to people with dementia and carers

Ea)ing de$entia! or aring for a person %ith de$entia! an lead to a loss of in o$e 1for e5a$ple! through loss of paid e$ploy$ent and onse6uently of pension fund ontri(utions2! as %ell as additional osts 1as ser)i es and support are seldo$ fully rei$(ursed or o)ered (y the 'tate! and $ay re6uire out-of-po &et pay$ents2. Boreo)er! the )alua(le %or& pro)ided (y arers is often ta&en for granted (y the state and their needs o)erloo&ed. As it $ay (e o$e in reasingly diffi ult for people %ith de$entia 1and in $any ases arers2 to get out and so ialise! it is i$portant that they ha)e a ess to afforda(le transport and a $eans of onta t %ith the outside %orld.

.e o$$endations for 3.1.+ ?inan ial support to people %ith de$entia and arers 1. 3n re ognition of the additional osts in urred %hen aring for a person %ith de$entia! arers should re ei)e a are allo%an e. 2. Beasures should (e ta&en to prote t the state pension rights of people %ho gi)e up paid e$ploy$ent or redu e their hours in order to are for a person %ith de$entia. 3. Aeople diagnosed %ith de$entia %ho ha)e to gi)e up paid e$ploy$ent should (e entitled to an allo%an e to o$pensate for the loss of in o$e and $easures to prote t their pension rights. +. Aeople %ith de$entia should (e entitled to ta5 dedu tions on the grounds of their in apa ity and for e$ploying a person to pro)ide ho$e are ser)i es. 5. Aeople %ith de$entia %ho re ei)e funding to pay for ser)i es should (e allo%ed to sele t relati)es and lose friends as pro)iders of those ser)i es. *. Aeople %ith de$entia should (e e5e$pt fro$ paying tele)ision and radio li enses and (e eligi(le for spe ial redu tions on the ost of pu(li transport.

&%'

-eneral framework for care and support

11

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

&%'%

The need for a flexi;le approach

Aeople %ith de$entia and their arers* ha)e a right to lead their li)es as nor$ally as possi(le. 3t is i$portant that they an re$ain in ontrol of their o%n li)es despite the disease. The life situations of people %ith de$entia and their arers are )aried and the needs and %ishes of people %ith de$entia and their arers are al%ays indi)idual! as is the need for different &inds of ser)i es. <eeds and life situations hange as the disease progresses and this is %hy people %ith de$entia and their arers need support and ser)i es on a ontinuous (asis. Aeople %ith de$entia need ti$ely diagnosis! a urate and appropriate infor$ation and suffi ient ounselling after the diagnosis has (een $ade! ade6uate and ongoing support! indi)idual assistan e and different types of are li&e ho$e are! day are and institutional are geared to%ards $aintaining fun tional apa ity. A fle5i(le approa h to so ial support! ser)i es and are is therefore essential. 3n order to offer high-6uality ser)i es and ensure a fle5i(le pro)ision of ser)i es! it is )ery i$portant to e)aluate thoroughly and regularly ea h indi)idual0s needs! fun tional apa ity and life-situation. This should (e o$pleted (y a regular and syste$ati follo%-up The )ie%s of people %ith de$entia are al%ays i$portant %hen designing! de)eloping! pro)iding and e)aluating ser)i es and are. 3t is therefore essential to find a %ay to as ertain the indi)idual needs of people %ith de$entia. ,ffi ial ser)i e $odels are often rather traditional and rigid and they do not suffi iently ta&e into a ount the indi)idual and hanging needs of people %ith de$entia and their arers. This leads to a situation in %hi h support is not gi)en in the right %ay at the right ti$e. As a person0s situation or the situation in a fa$ily an hange 6uite rapidly and there $ay (e risis situations at ho$e! the ser)i e syste$ should (e a(le to rea t to these hanges in a ti$ely and i$$ediate fashion. To $eet these )arying needs! fle5i(ility and possi(ilities for hoi e are essential. 3ndi)idually tailored are and ser)i e pa &ages are therefore needed (e ause standard and general solutions are not effe ti)e. ?le5i(ility in ser)i es and are an only (e a hie)ed (y listening to people %ith de$entia and their arers0 opinions! %ishes and needs! assessing the situation thoroughly and ha)ing enough infor$ation a(out their o)erall situation. ?le5i(ility $ay also (e lin&ed to the ti$ing or lo ation of a ser)i e. 3ndeed! a fle5i(le approa h is parti ularly i$portant in rural areas %here ser)i es are often s ar e.

.e o$$endations for 3.2.1 The need for a fle5i(le approa h 1. Aeople %ith de$entia should ha)e the possi(ility of hoi e and a ess to indi)idually tailored are and ser)i e pa &ages. 2. The syste$ of ser)i e pro)ision should (e suffi iently fle5i(le to allo% for i$$ediate assistan e %hene)er the person0s life-situation hanges or in ti$es of risis. 3. The )ie%s of people %ith de$entia should al%ays (e ta&en into a ount %hen designing! de)eloping! pro)iding and e)aluating ser)i es and are.
*

The ter$ 8 arers9 is used here to refer to partners! relati)es and lose friends %ho li)e %ith the person %ith de$entia or are losely in)ol)ed in their are 1on an infor$al (asis2. Eo%e)er! it should (e noted that $any people %ith de$entia li)e alone andDor ha)e no arers.

12

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

+. The indi)idual needs! fun tional apa ity and life-situation of the person %ith de$entia should (e thoroughly and regularly e)aluated! and a regular and syste$ati follo%-up arried out. 5. The indi)iduality of the person %ith de$entia should also (e respe ted. This $ight in lude hisDher sense of priorities! )alues! ultural and religious (eliefs and pra ti es! personal history and idiosyn rasies. *. 3n order to a ess su h infor$ation! people pro)iding ser)i es should ta&e the ti$e to o$$uni ate %ith people %ith de$entia! tal& to arers and onsult any a)aila(le %ritten do u$ents su h as ad)an e dire ti)es or state$ents of )alues. &%'%' The reha;ilitative approach

The reha(ilitati)e approa h is one e5a$ple of a fle5i(le approa h to ser)i es! support and are. The $ain ai$ of the reha(ilitati)e approa h is to support the fun tional apa ity of the person %ith de$entia and the 6uality of life and sense of ontrol of (oth the person %ith de$entia and hisDher arer. A reha(ilitati)e approa h in ser)i es and are is ai$ed at supporting indi)idual resour es! autono$y and self-deter$ination! and self-effi a y in the daily life of the person %ith de$entia and his or her arer. 3n this %ay! possi(ilities for the person %ith de$entia to ta&e part in $eaningful a ti)ities are enhan ed and supported. The a)aila(ility of hoi e ontri(utes to%ards self-deter$ination. The reha(ilitati)e approa h in de$entia are an (e seen as refle ting the (asi idea of the 37? 13nternational 7lassifi ation of ?un tioning! Disa(ility and Eealth! =E, 2001"2 in %hi h disa(ility is des ri(ed as a dyna$i intera tion (et%een health onditions 1e.g. diseases! disorders2 and onte5tual fa tors 1personal and en)iron$ental fa tors2. En)iron$ental fa tors in lude the physi al! so ial and attitudinal en)iron$ent and the en)iron$ent an either support or hinder a person0s fun tioning! parti ipation and a ti)ities. De$entia affe ts all areas of a person0s fun tional apa ity 1physi al! psy hologi al! ogniti)e and so ial2. The %ay that de$entia progresses and its effe ts on a person0s life are al%ays indi)idual. ?un tional apa ity is affe ted (y $any fa tors su h as the type and se)erity of de$entia! other diseases! $edi ation! personality and the physi al and psy hoso ial en)iron$ent. 3t is possi(le to support people0s apa ities and resour es (y $eans of a reha(ilitati)e approa h of %hi h the holisti assess$ent of fun tional apa ity is a ornerstone. .espe ting hu$an rights and indi)iduality! supporting autono$y and self-deter$ination! re ognising lost and re$aining s&ills and supporting fun tional apa ity are (asi )alues %ithin a reha(ilitati)e approa h! %hi h an (e a hie)ed (y listening to the person %ith de$entia! trying to understand hisDher situation! %ishes and needs and in)ol)ing hi$ or her and his or her arer in planning and e)aluating the are pro)ided. Aositi)e results ha)e (een o(tained using different $ethods of the reha(ilitati)e approa h e.g. the $ulti-fa torial support syste$ in %hi h (oth the person %ith de$entia and his or her fa$ily arer are supported8. The reha(ilitati)e approa h should (e a &ey prin iple in day are ser)i es! short-ter$ are and long-ter$ are. <
" 8

=orld Eealth ,rganisation. 2001. 3nternational 7lassifi ation of ?un tioning! Disa(ility and Eealth: 37?. AirttilG T! Eei$onen '! #ranH '. 200". The essential role of reha(ilitation in de$entia are. #erontologia 211+2:320328. This arti le is pu(lished in ?innish.

13

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

The rehabilitative approach throughout the #hole care chain 3$pro)ed early diagnosis alls for the use of all possi(le $eans to $aintain (oth the 6uality of life and fun tional apa ity of people %ith de$entia. 3t gi)es the$ the possi(ility to ontinue to lead a fairly nor$al life and to spend $any good years at ho$e. A reha(ilitati)e approa h to ser)i es and are an (e seen as an essential $eans of e$po%ering (oth people %ith de$entia and their arers. As the situation is onstantly hanging along %ith the progression of the disease! setting realisti ai$s and hoosing indi)idual and appropriate $eans of support are &ey fa tors in the reha(ilitati)e approa h. The $ain ai$ is not ne essarily to i$pro)e fun tional apa ity (ut rather to $aintain it and to reate real possi(ilities to use it to its full e5tent. The general ai$s of reha(ilitation differ at different stages of the disease. 3n the early stages! it is i$portant to support a person0s independen y! nor$al a ti)ities and usual %ay of life! to support fun tional apa ity! to $aintain $eaningful roles and fun tions and to find appropriate o$pensatory strategies for those apa ities that are already affe ted (y the disease. 3n the $iddle stage! it is i$portant to support re$aining a(ilities and resour es! and to reate possi(ilities for su ess and a sense of a hie)e$ent in order to support a person0s identity. 3n the se)ere stage! it is essential to pro)ide support for $ental and physi al apa ities as %ell as for the a(ility to intera t. En)iron$ental fa tors should also (e ta&en into a ount in order to reate a pleasant en)iron$ent and pre)ent disorientation. -ssessment of the functional capacity and life situation of the person #ith dementia =hen e)aluating fun tional apa ity %ithin the reha(ilitati)e approa h! it is essential to loo& at the person %ith de$entia in a holisti %ay i.e. as an indi)idual %ith an indi)idual life history! )alues! preferen es! %ishes and needs as %ell as (eing a part of his or her en)iron$ent and so iety. The e)aluation of fun tional apa ity should in lude inter)ie%ing (oth the person %ith de$entia and his or her arer! using )alidated $easure$ents and tests and o(ser)ing ho% the person %ith de$entia is oping %ith daily a ti)ities. The e)aluation should (e arried out regularly and %hene)er there are o()ious hanges in the person0s situation. 3t is i$portant not only to loo& at the indi)idual (ut also the en)iron$ent. The en)iron$ental fa tors an either support or restri t the fun tional apa ity of the person %ith de$entia. -n unbro.en continuum in services and care The ontinuu$ in reha(ilitati)e ser)i es is i$portant (e ause the situation of ea h person %ith de$entia hanges as the disease progresses. =hilst people %ith de$entia and their arers need lear infor$ation! support for adaptation 1adaptation training ourses2 and ounselling at the (eginning of the disease in order to (e a(le to lead a full a life as possi(le! these needs gradually hange. 'o ial support should (e pro)ided on a ontinual! ongoing (asis! fro$ dete tion of the first sy$pto$s to the end of the disease. Aeople %ith de$entia and their arers should &no% at all ti$es %here to turn for infor$ation! support and ounselling. The .no#ledge and s.ills of social and health care personnel 4sing a reha(ilitati)e approa h pro)ides resour es and also supports fun tional apa ities (oth indi)idually and effe ti)ely. Eo%e)er! this pla es $any de$ands on the so ial and health are personnel. 3t ne essitates the olle tion of infor$ation fro$ a )ariety of sour es a(out

1+

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

the person0s preferen es and %ishes! his or her personality and life- ourse! the disease and its stage and the person0s fun tional apa ity in order to pro)ide help and support in the (est possi(le %ay. This ena(les personnel to reate opportunities for people %ith de$entia to use their resour es and apa ities in their e)eryday li)es. Eo%e)er! personnel $ust (e trained in using a reha(ilitati)e approa h in their %or& and edu ated in de$entia are. A ti)ities and a ti)ity progra$$ing is an essential ele$ent of reha(ilitati)e are. Through indi)idually sele ted a ti)ities the person %ith de$entia is en ouraged and supported to use hisDher physi al! ogniti)e! e$otional and so ial resour es to the full e5tent! %hi h i$pro)es and $aintains hisDher fun tional apa ity. The a ti)ities should (e $eaningful for the indi)idual in 6uestion and they should pro)ide a sense of usefulness! pleasure! su ess and effi a y. 7hoosing the right &ind of a ti)ities is a hie)ed %ith the help of a o$prehensi)e assess$ent of the person0s indi)idual needs and resour es.

.e o$$endations for 3.2.2 The reha(ilitati)e approa h 1. The reha(ilitati)e approa h should (e indi)idually and holisti ally planned and pro)ided! and should (e de)eloped and pro)ided on a $ultidis iplinary (asis %ith the o-operation of arers! and on the (asis of infor$ation a(out the life history and urrent situation of the person %ith de$entia and hisDher needs and %ishes. 2. A entralised infor$ation syste$ should (e de)eloped to ensure that su h infor$ation is readily a)aila(le to the rele)ant personnel and that onfidentiality is respe ted. 3. A reha(ilitati)e approa h should (e syste$ati ! ti$ely and fle5i(ly pro)ided. The type and stage of de$entia! as %ell as the personality! life situation! lifestyle and indi)idual ha(its of the person %ith de$entia! should (e ta&en into a ount. +. An indi)idual plan for reha(ilitation is needed! in %hi h the ai$s! $eans and responsi(ilities are learly defined. This plan should (e dra%n up (y a $ulti-dis iplinary tea$ of professionals together %ith the person %ith de$entia and hisDher arer and it should (e e)aluated regularly and syste$ati ally. 5. 3n order to support andDor help to $aintain 6uality of life and fun tional apa ity! appropriate and ti$ely support! ser)i es and are are needed at the different stages of the disease. 'er)i es should (e pro)ided on a ontinuous and sea$less (asis (ased on a thorough and holisti needsassess$ent and on an e)aluation of fun tional apa ity. *. The fun tional apa ity of the person %ith de$entia should (e assessed thoroughly and in a syste$ati %ay. ". The reha(ilitati)e approa h should (e a &ey prin iple in day are and in different for$s of institutional are. 8. Aersonnel should (e trained in using a reha(ilitati)e approa h in their %or& and edu ated in de$entia are.

15

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

&%& Suita;ilit:7 accessi;ilit: and ;arriers to o;taining support7 services and care
The sur)eys arried out on (ehalf of Al/hei$er Europe into the a)aila(ility of so ial support throughout Europe re)ealed that %hilst ser)i es and )arious for$s of support e5ist! this is not al%ays suita(le andDor e6ually a essi(le to all people %ith de$entia and arers in spe ifi ountries. 3n so$e ases! the (arriers are (ased on eligi(ility riteria! in so$e ases on a la & of a)aila(ility of ser)i es and so$eti$es on a o$(ination of the t%o. 3n so$e ountries! people diagnosed %ith one of the less o$$on for$s of de$entia annot a ess ser)i es (e ause only ertain for$s of de$entia are offi ially re ognised. =here ser)i es do e5ist! people %ith less o$$on for$s of de$entia su h as fronto-te$poral de$entia! )ariant 7reut/feldt-Ja&o( disease or al ohol-related de$entia $ay find that the ser)i es do not orrespond to their spe ifi needs. >ounger people %ith de$entia and those %ho also ha)e learning disa(ilities su h as Do%n0s syndro$e $ay feel out of pla e in day are entres for people %ith de$entia %ho are $ostly older. 3t is i$portant to ta&e into onsideration the spe ifi needs of ertain groups of people %ith de$entia e.g. those %ho li)e alone or %ho ha)e li$ited finan ial resour es. Eo%e)er! su h riteria are so$eti$es used to li$it a ess to ser)i es and support for other groups of people %ith de$entia. 'i$ilarly! the fa t that a person %ith de$entia li)es %ith other people should not lead to an assu$ption that the latter %ill pro)ide the are heDshe needs 1although there is a legal o(ligation in so$e ountries for ertain relati)es to support dependent parents2. A essing appropriate support is parti ularly pro(le$ati %hen the ser)i es a)aila(le are or %ere originally intended for a different group of people e.g. the elderly or people %ith disa(ilities. ?or e5a$ple! ser)i es %hi h %ere designed for people %ith disa(ilities are often hea)ily orientated to%ards physi al needs. 3n su h ases! the typi al sy$pto$s of de$entia $a&e it diffi ult for people to use so$e of the ser)i es that are a)aila(le e.g. $eals on %heels! ertain ho$e $onitoring syste$s and day are %here no transport is pro)ided. As the diffi ulties that they en ounter are not al%ays o()ious or e)en )isi(le! their real needs $ay go un$et. 'tandard ser)i es are not al%ays appropriate for people fro$ ertain ethni or other $inority groups. 7onse6uently! people fro$ su h groups $ay (e e5 luded or e5 lude the$sel)es. ?ailure to de)elop appropriate ser)i es %hi h respond to the needs of )arious $inority groups and respe t their ultural differen es 1e.g. lin&ed to language! dietary re6uire$ents et .2 represents a for$ of dis ri$ination.

.e o$$endations for 3.3 'uita(ility! a essi(ility and (arriers to o(taining so ial support Different types of dementia and disability status 1. 'er)i es should (e de)eloped %hi h ta&e into a ount the spe ifi needs of people %ith different types of de$entia e.g. %ith flu tuating apa ity! different le)els of $o(ility and $ore pronoun ed alteration of $ood. E5a$ples of su h ser)i es $ight in lude day are for people %ith Do%n0s syndro$e or for people %ith early onset

1*

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

2. 3.

+.

5.

de$entia or support groups for people %ith fronto-te$poral de$entia et . Diagnoses of spe ifi for$s of de$entia should not (e used to e5 lude ertain people %ith de$entia fro$ the ser)i es and support they need. 3f a ess to ser)i es and support is dependant on offi ial re ognition of a disa(ility! then all for$s of non-re)ersi(le de$entia should (e a epted as ontri(uting to%ards the re6uired le)el of disa(ility. Eligi(ility riteria (ased on disa(ility or are needs should ta&e into a ount the spe ifi nature of de$entia and onse6uently a)oid (ias to%ards physi al disa(ility or needs. The physi al needs of people %ith de$entia should ne)ertheless (e re ognised and appropriate support pro)ided e.g. pre)ention and treat$ent of de u(itus ul ers and in ontinen e and assistan e %ith $o(ility! eating and drin&ing. Aeople %ith de$entia should not ha)e to %ait until a spe ifi le)el of general disa(ility or glo(al need has (een rea hed (efore (eing onsidered eligi(le for any ser)i es.

Addressing specific needs *. 'pe ifi assess$ent %ith appropriate ase $anage$ent should (e pro)ided to people %ith de$entia! ta&ing into a ount any spe ifi needs e.g. of younger people %ith de$entia! people %ith de$entia %ho li)e alone et . 'upport and ser)i es pro)ided should (e indi)idually tailored to those needs ". Beasures should (e ta&en to pro)ide people %ith de$entia and arers fro$ ethni $inorities %ith ser)i es and support that respe t their ultural traditions! language and dietary restri tions. There $ay also (e less o()ious $inority groups %ithin the general population of spe ifi ountries %ith spe ial needs and e5pe tations. 8. Aeople %ith li$ited resour es should (e gi)en the finan ial assistan e ne essary to a ess the ser)i es and support they need (ut ser)i es should not (e li$ited solely to people on a lo% in o$e. &ural areas and isolated or close .nit communities C. Appropriate for$s of support! effe ti)e o-ordination and additional transport should (e pro)ided in rural or isolated areas. 10. <o)el approa hes should (e de)eloped if ne essary %hi h ta&e into onsideration the parti ular needs and situation of people li)ing in su h areas. 11. Beasures should (e ta&en to ensure a suffi ient nu$(er of 6ualified ser)i e pro)iders in rural and isolated areas. 12. A spe ial effort should (e $ade to o$(at stig$a in lose &nit o$$unities. -vailability of suitable structures and appropriately trained staff 13. Beasures should (e ta&en to ensure that there is a suffi ient nu$(er of ser)i es! are net%or&s and are stru tures along %ith trained staff in all areas. =here this is not the ase! o$pensatory $easures should (e ta&en su h as $o(ile are tea$s! organised transport and $ore fle5i(le are arrange$ents. 1+. 3nstitutions for long-ter$ are are needed %ith staff %ho are trained in aring for people %ith different types of de$entia %hose needs $ay (e different. 15. 7ontinuous training is needed for all sta&eholders and at e)ery le)el of ser)i e pro)ision fro$ de ision $a&ing to pra ti e. 1*. De$entia should (e a o$ponent part of do tors0 undergraduate training. 1". 3nfor$ation should (e pro)ided to general pra titioners a(out the (urden of aring on

1"

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

arers and ho% this $ay affe t their 6uality of life. 18. ,ther non-$edi al staff! as %ell as )olunteers! should! as a $ini$u$! ha)e a (asi understanding of %hat de$entia is and ho% to o$$uni ate %ith people %ith de$entia. They should (e en ouraged to ta&e part in su h training and re%arded for doing so e.g. in ter$s of a (onus or a higher status.

Specific services and support for people with dementia and carers
Outpatient services and self=help

,%

De$entia affe ts ogniti)e fun tions su h as $e$ory! logi al reasoning and a(stra t thought %hi h an not only affe t the a(ility to arry out ertain e)eryday tas&s su h as shopping! oo&ing! and leaning! (ut also lead to self negle t and ontri(ute to%ards a idents. 3t an also ause diffi ulties %hi h! on the surfa e! $ay see$ to (e purely physi al e.g. diffi ulties %ith $o(ility! $anipulating o(:e ts! )isual per eption! s%allo%ing and in ontinen e! (ut a tually are also influen ed (y ogniti)e diffi ulties. The o$(ined ogniti)e and physi al pro(le$s $a&e it diffi ult for people %ith de$entia to li)e independently and $a&e the$ in reasingly dependent on other people for assistan e. To o$pli ate $atters! ertain (eha)ioural and psy hologi al sy$pto$s! su h as aggression! depression and %andering! an render the tas& of pro)iding are $ore diffi ult and $ay ha)e serious onse6uen es e.g. a(use. Eo%e)er! people %ith de$entia do not all e5perien e the sa$e sy$pto$s in the sa$e order or to the sa$e e5tent. Their needs and apa ities are )ery indi)idual! hen e the need for a %ide range of ser)i es and a fle5i(le syste$ as $entioned in se tion 3.2.1 a(o)e. ?inally! in order to preser)e the $ental and physi al health and %ell(eing of arers! their needs $ust also (e re ognised and appropriate support pro)ided.

.e o$$endations for +.1 ,utpatient ser)i es and self-help *eneral issues 1. 'er)i es should (e a)aila(le %hi h are suited to the spe ifi needs of people %ith de$entia. This $ay in)ol)e reating ne% ser)i es andDor adapting e5isting ser)i es. 2. A de$entia are oordinator 1or 8 are $anager92 should (e appointed for e)ery person %ith de$entia.

18

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

3. Aersonnel pro)iding ho$e are ser)i es should (e en ouraged to in)ol)e people %ith de$entia in daily a ti)ities and are to the e5tent that this is possi(le so as to help preser)e their re$aining apa ities. +. =hen pro)iding ser)i es! the i$portan e of so ial intera tion for people %ith de$entia should (e re ognised. 5. A sur)ey should (e arried out in)ol)ing people %ith de$entia and arers in order to deter$ine the &inds of ser)i es and support needed.

+nformation, self/help organisations and volunteers *. There should (e a general infor$ation ser)i e to orientate people to%ards the ser)i es and support %hi h are a)aila(le to the$ in onne tion %ith their ondition. ". 3n ea h o$$unity! there should (e a 8de$entia onta t person9 %ho is a)aila(le to ans%er 6uestions a(out the disease and the &inds of ser)i es a)aila(le. 8. Assistan e should (e pro)ided to people %ith de$entia %ho ha)e diffi ulty understanding or arrying out the pro edure for applying for support. C. Aeople %ith de$entia should ha)e a ess to an ad)o ate %ho an infor$ the$ a(out their rights and if ne essary spea& on their (ehalf a(out $atters relating to their rights not (eing respe ted. 10. 'pe ial attention should (e paid to the infor$ation needs of people %ith de$entia li)ing alone 11. The i$portant role that )olunteers! neigh(ours and people fro$ the lo al o$$unity play in the pro)ision of ser)i es and support should (e re ogni/ed and pro$oted. 12. Folunteers! neigh(ours and people fro$ the lo al o$$unity pro)iding ser)i es and support to people %ith de$entia should (e pro)ided %ith training and! if ne essary! so$e for$ of offi ial identifi ation. This should also (e the ase for people %ho ha)e (een appointed in ad)an e (y the person %ith de$entia to $a&e de isions on hisDher (ehalf. Different types of care in the home Aersonal assistan e and ho$e help 13. 'uper)isionDassistan e for ta&ing $edi ation should (e pro)ided if needed! not :ust for $edi ation lin&ed to the treat$ent of de$entia (ut also for other o$or(id onditions. 14. Assistan e %ith personal are should (e pro)ided if and %hen needed i.e. at )arious ti$es of the day and as far as possi(le in a ordan e %ith the person0s usual routine. 15. A o$(ined pre)enti)e and urati)e approa h to s&in are and in ontinen e should (e pro)ided in luding (oth $edi al and non-$edi al aspe ts of su h

1C

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

are and the pro)ision of appropriate and suffi ient e6uip$ent.

ontinen e pads or

1*. Beasures to assist %ith eating or drin&ing andDor the pro)ision of $eals should (e adapted to the spe ifi needs of people %ith de$entia. 17. Assistan e %ith house%or&! $o(ility! shopping! laundry and transport should (e pro)ided as %ell as ad ho assistan e %ith s$all-s ale ho$e $aintenan e :o(s. <ight are 18. A ho$e-(ased night are ser)i e should (e a)aila(le to people li)ing alone in need of are or super)ision at night. 1C. Bo(ile night are ser)i es should also (e a)aila(le. 20. 7arers loo&ing after a person %ith de$entia in need of night-ti$e should (e entitled to a repla e$ent arer on a regular (asis. Aalliati)e are 21. Aeople %ith de$entia in need of palliati)e are should (e a(le to re ei)e palliati)e are ser)i es and support at ho$e. 22. =hilst the de ision of %here to re ei)e palliati)e are should (e (ased on the needs and %ishes of the person %ith de$entia! the )ie%s of arers should also (e onsidered. 23. A palliati)e are oordinatorDad)isor should (e appointed for e)ery person %ith de$entia re ei)ing palliati)e are. EisDher tas& %ould (e to oordinate the )arious ser)i e pro)iders and (e a)aila(le to arers for ad)i e at any ti$e. 7ounsellingDtherapy> and support for people %ith de$entia 24. Aeople %ith de$entia should ha)e a ess to indi)idual or group ounsellingDtherapy! psy hoedu ation and support for as long as it is (enefi ial to the$ and throughout the %hole ourse of the disease. 25. As the disease progresses and )er(al s&ills deteriorate other approa hes to enhan e psy hologi al and e$otional %ell-(eing should (e $ade a)aila(le to people %ith de$entia10. 7ounselling! therapy! support and training for arers 26. 7arers should ha)e a ess to ounsellingDtherapy! on an indi)idual or group (asis! and psy hoedu ation depending on their needs. 2". Ierea)e$ent ounselling should (e a)aila(le to arers.
C

are

The %ord ounselling is used here to refer to psy hologi al ounselling and not to the si$ple pro)ision of infor$ation or ad)i e. 10 A complete set of guidelines on ps:chosocial interventions were produced in the framework of the EuroCo#e pro?ect ;: )ernooi?=#assen et al% and can ;e o;tained from Alzheimer Europe%

20

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

28. 7arers should ha)e a ess to training ai$ed at helping the$ ope %ith spe ifi tas&s related to aring (ut also to ope %ith the e$otional and physi al effe ts of aring. 2C. =hen pro)iding ounselling! therapy or training for arers! the need to find suita(le arrange$ents for the are of the person %ith de$entia should also (e onsidered as other%ise arers $ay (e una(le to ta&e ad)antage of the ser)i es (eing offered. 30. ?ree ad)i e fro$ e5perts should (e a)aila(le (y phone! prefera(ly round the lo & e.g. 2+ hour telephone helpline or an out-of-hours nu$(er for e$ergen ies. 31. 3nfor$ation! support groups and indi)idual ounsellingDtherapy if ne essary should (e $ade a)aila(le to hildren and adoles ents li)ing in fa$ilies %ith a person %ith de$entia. A different approa h $ay (e needed for ea h group. 32. 3n ases %here a hild or adoles ent has (e o$e the arer of hisDher parent or relati)e appropriate professional support should (e pro)ided and are ta&en to $ini$ise further uphea)al. 0olidays, social and leisure activities 33. The i$portan e of so ial onta t! $eaningful a ti)ities and physi al e5er ise for the %ell-(eing of people %ith de$entia and the preser)ation of their re$aining apa ities should (e re ogni/ed and for$ an integral part of are pa &ages %hether at ho$e! in day are entres or in residential are settings. 3+. ,pportunities for people %ith de$entia and arers to so iali/e together should (e en ouraged e.g. Al/hei$er afJs and e5 ursions. 35. Beasures should (e ta&en to ena(le people %ith de$entia and arers to ha)e a holiday fro$ ti$e to ti$e either together or separately. 3*. Al/hei$er asso iations! %or&ing in olla(oration %ith arers and )olunteers! %ho organi/e holidays for people %ith de$entia 1%ith or %ithout arers2 should (e finan ially supported (y the 'tate.

,%'

Semi=residential care and respite for carers

At so$e stage! people %ith de$entia %ho are li)ing at ho$e $ay either need or (enefit fro$ spe ifi additional are! %hi h annot (e o(tained in the ho$e en)iron$ent. 3n this ase! the are an only (e pro)ided on a se$i-residential (asis e.g. day are or night are. The de$and for this type of are )aries (e ause ea h person0s needs and situation are different. ?or e5a$ple! one person $ight %ish to attend a day are entre for so ial intera tion or perhaps to ta&e part in a ti)ities designed to sti$ulate ogniti)e a(ilities! %hereas another $ight attend as he or she annot (e left alone for long periods of ti$e for safety reasons or due to spe ifi needs.

21

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

'o$eti$es day or night are also ser)es as a $eans of respite for arers! as %ell as o)er for the usual arer %ho $ay (e te$porarily a(sent. 7arers annot (e e5pe ted to are for people %ith de$entia 2+ hours a day " days a %ee& %ithout a (rea&. .espite pro)ides the$ %ith a $u h needed rest %hi h is not only essential for their $ental and physi al %ell(eing! (ut an also help the$ to ope %ith aring for longer. Eo%e)er! for this to (e effe ti)e! they $ust ha)e the reassuran e that the person %ith de$entia is safe and is (eing pro)ided %ith 6uality are. .e o$$endations for +.2 'e$i-residential are and respite for arers Day care 1. Appropriate day are should (e pro)ided to people %ith de$entia. This should (e pro)ided in an en)iron$ent %hi h has (een designed or adapted %ith the needs of people %ith de$entia in $ind. 2. Day are entres should (e run (y staff %ho ha)e (een trained in de$entia are. 3. A ess to $edi al staff 1either on site or %ho an (e alled in2 should (e a)aila(le in all day are entres for people %ith de$entia. +. ?or $any people! espe ially those li)ing alone! the transport ser)i e $ay ha)e to (e o$(ined or oordinated %ith personal assistan e e.g. helping the person out of (ed! to get %ashed and to get dressed. 5. ?or people %ith de$entia %ho do not li)e alone! transport ti$es should (e oordinated %ith arers as they $ay ha)e other o(ligations e.g. lin&ed to s hool hours if they ha)e hildren andDor %or&ing hours if in paid e$ploy$ent. 1ight care *. <ight are should (e a)aila(le to people %ith de$entia %ho annot (e ared for at night at ho$e and %ho! o asionally or regularly! need are or super)ision at night. ". Additional pla es for night are should (e a)aila(le for e$ergen y situations e.g. %here a arer is une5pe tedly una(le to pro)ide are at night. 8. =here)er possi(le! night are should (e pro)ided in s$all-s ale units rather than on large %ards so as to $ini$i/e onfusion and distress in the person %ith de$entia. &espite for carers C. 7arers should (e entitled to respite on a regular (asis if and %hen re6uired and also in the for$ of a $ini$u$ nu$(er of %ee&s per year. 10. A repla e$ent arer or an allo%an e to pay for a repla e$ent arer should (e pro)ided during this period.

22

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

11. ?le5i(le respite are ser)i es should (e pro)ided %hi h ta&e into onsideration the arer0s needs and the %ell(eing of the person %ith de$entia. 12. =hen organi/ing respite are! $easures should (e ta&en to $ini$i/e the possi(ility of ausing distress to the person %ith de$entia. 13. .espite are ser)i es in the ho$e should (e de)eloped.

,%&

"esidential care

#ood 6uality! afforda(le residential are fa ilities for people %ith de$entia are la &ing in $ost ountries. 7onse6uently! a ess to su h are is often li$ited to people %ith de$entia %ho fulfil spe ifi riteria! su h as ha)ing li$ited finan ial resour es! li)ing alone or (eing in urgent need of so$e for$ of residential are. Eo%e)er! there are $any $ore people %ho %ould (enefit fro$ su h are and %ho should ha)e e6ual a ess to it. .esidential are should not (e onsidered as a last resort! or :ust for people %ith )ery ad)an ed de$entia. ,n the ontrary! it an also (e a %ay to pro$ote the autono$y of people %ith de$entia at an earlier stage of the disease. 3n its guidelines on good end-of-life are for people %ith de$entia! Al/hei$er Europe learly states its opinion that palliati)e are is the (est option for people %ith end-stage de$entia. Eo%e)er! residential palliati)e are fa ilities %hi h a ept people %ith de$entia are la &ing in Europe and palliati)e are ser)i es at ho$e are not al%ays a)aila(le or ade6uate. 3t should also (e noted that palliati)e are is an approa h and a philosophy %hi h an (e adopted $u h earlier on in the ourse of the disease and not li$ited to the )ery last stage of life.

.e o$$endations for +.3 .esidential are

'hort/term residential care 1. 'hort-ter$ residential are fa ilities should (e a)aila(le to ater for the te$porary need for professional round-the- lo & are of people %ith de$entia. 2. Esta(lish$ents a epting people for short-ter$ residential are should ha)e suita(ly 6ualified and trained personnel to ta&e are of people %ith de$entia. E$ergen y %ards of hospitals are not at all suita(le. 3. 'u h are should (e a)aila(le if and %hen needed. The assess$ent of need should not fo us entirely on the ondition of the person %ith de$entia (ut should also ta&e into a ount the needs and situation of arers. +. 7are should (e ta&en to a)oid $o)ing the person %ith de$entia around too
11

<ational reports of the European Asso iation for Aalliati)e 7are 1http:DD%%%.eap net.orgDAoli yD7ountries.eport.ht$2 and the Al/hei$er Europe0s o$parati)e report on so ial support to people %ith de$entia and arers produ ed in the fra$e%or& of the Euro7oDe pro:e t.

23

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

often as this ould (e distur(ing and lead to onfusion! disorientation! stress andDor a further deterioration of hisDher ondition. 5. As an alternati)e to short-ter$ residential are! in the ase of a la & of a)aila(le pla es! alternati)e for$s of are should (e de)eloped e.g. te$porary li)e-in arers! (oarding.

Long/term residential care *. Beasures should (e ta&en to ensure that e)ery person %ith de$entia has a ess to afforda(le and good 6uality long-ter$ residential are %hen needed. ". =aiting lists should (e redu ed and te$porary solutions found if ne essary. 8. 'uita(le long-ter$ are fa ilities should (e set up %hi h ha)e (een designed %ith the needs of people %ith de$entia in $ind. C. 7reati)e solutions to long-ter$ are should (e in)estigated parti ularly for sparsely populated areas e.g. (oarding! li)e-in arers! s$all-s ale fa ilities et . 10. Beasures should (e ta&en to ensure that people %ith de$entia on a lo% in o$e also ha)e a ess to long-ter$ residential are. ,n the other hand! pla es should not (e restri ted solely to people on a lo% in o$e! %ith the $ost se)ere le)el of disa(ility andDor li)ing alone. 11. @ong-ter$ residential are should (e offered %hen it %ould (e (enefi ial to the person %ith de$entia %ithout %aiting until hisDher ondition deteriorates to su h an e5tent that it (e o$es an a(solute ne essity. 12. Arofessional arers should (e ade6uately trained in de$entia are. 13. <on-$edi al are staff e$ployed in su h esta(lish$ents should also ha)e at least a (asi understanding of de$entia and of ho% to o$$uni ate %ith people %ith de$entia.

2alliative care in residential, hospital or hospice setting 1+. End-stage de$entia should (e re ognised as a ter$inal ondition %hi h $ay ne essitate palliati)e are. 15. Aeople %ith de$entia should (e entitled to residential palliati)e are %hen their ondition ne essitates it. 1*. A diagnosis of de$entia andDor la & of on ologi al diagnosis should not ser)e as a $eans to e5 lude a person %ith de$entia fro$ a pla e in a residential palliati)e are esta(lish$ent. 1". Al/hei$er Europe has %ritten a full set of guidelines on the good end-of-life are of people %ith de$entia %hi h o)ers a %ide range of issues lin&ed to the pro)ision of palliati)e are to people %ith de$entia

2+

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

Examples of good practice

"especting dignit: and autonom: "especting freedom of movement <NO@

'taff at the 8Ilidensol9 residential ho$e in <or%ay ha)e de)eloped a pro edure designed to respe t indi)idual freedo$ of $o)e$ent %hilst at the sa$e ti$e ta&ing $easures to pro$ote safety. Aeople %ith de$entia %ith suffi ient apa ity an! %ith the head of the unit! sign a %ritten agree$ent %hi h outlines the onditions for going out alone. Then! %hene)er they go out! they tell staff %hen they %ill (e (a &. 3f they are not (a & (y the agreed ti$e! steps are ta&en to find the$. ?irst! staff all the$ on their $o(ile phone; if unsu essful! they then go out to loo& for the$. 3f they do not find the$! they onta t relati)es. ?inally! as a last resort! they onta t the poli e. "especting individualit: and different rh:thms of life <1"@

A s$all residential are entre in the Ieau:olais region of ?ran e offers indi)idualised! tailored a ti)ities at night %hi h ta&e into a ount people0s %ishes and different rhyth$s of life e.g. $a&ing a&es %ith a for$er (a&er! %at hing fil$s %ith a fil$ enthusiast et . This is reported to ha)e resulted in al$er nights %ith less an5iety and a redu tion in the use of sleeping ta(lets. Assistance with paperwork and administrative formalities <.$@

4nder the long-ter$ are insuran e in @u5e$(ourg! people are entitled to 8support9 for up to 1+ hours per %ee&. ,ne of the ser)i es %hi h falls into this ategory is help %ith offi ial paper%or&. This is parti ularly i$portant for people %ith de$entia %ho do not yet ha)e a po%er of attorney or so$e for$ of guardianship. 0rotecting the rights of people with dementia still in paid emplo:ment <EN-ASCOT@

3n the 4nited Kingdo$! the Disa(ility Dis ri$ination A t 1CC5 pre)ents dis ri$ination on the grounds of disa(ility. E$ployers ha)e a duty to $a&e reasona(le ad:ust$ents to a :o( or %or&pla e 1e.g. delegating responsi(ilities or hanging the nature of the person0s tas&s2 if they are a%are of a person0s disa(ility and to grant spe ial lea)e for reha(ilitation! assess$ent or treat$ent. 0rox: decision making and representation in the domain of welfare <SCOTA9E@

3t is possi(le in ' otland for a person to hoose! in ad)an e of in apa ity! a %elfare po%er of attorney %ho an $a&e de isions a(out are and treat$ent on hisDher (ehalf %hen heDshe is no longer a(le to do so. 3n Ielgiu$! a person an hoose a 8personne de onfian e9 1trust%orthy person2 in ase of future in apa ity. The role of the trust%orthy person is to re ei)e $edi al infor$ation on (ehalf of the person %ith in apa ity and to spea& on hisDher (ehalf %hen $edi al de isions need to (e $ade.

25

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

Social inclusion and ps:chosocial support Social contact and holida:s for people with dementia and carers <.$A-EAN.@

The super)ision ser)i e that is a)aila(le in @u5e$(ourg and #er$any under the long-ter$ are insuran e also pro)ides a $eans to (rea& the isolation of people %ith de$entia %ho li)e alone and $onitor their general %ell-(eing and needs. 3n @u5e$(ourg! e5 ursions and so ial a ti)ities fall into the ategory 8support9 and an (e refunded under the long-ter$ are insuran e. Alzheimer CafBs <N.@

Al/hei$er 7afJs! (ased on a on ept de)ised (y ILre Biesen in the <etherlands! ha)e (een set up in a nu$(er of ountries in Europe. The Al/hei$er 7afJ is an infor$al $eeting pla e %here people %ith de$entia and arers an get together! so ialise! e5 hange e5perien es! learn ho% to ope %ith the disease (etter and (enefit fro$ support and ad)i e fro$ professionals. 3t is a &ind of 8prote ted en)iron$ent9 %here they an rela5 %ithout fear of riti is$ fro$ outsiders or of people noti ing the sy$pto$s of de$entia as e)eryone is in a si$ilar situation. Outings for couples <1"@

An Al/hei$er Asso iation in Bulhouse 1?ran e2 organises days out for ouples %here one of the partners has de$entia. ,n e a $onth! a day are fa ility %ith a professional arer is $ade a)aila(le to the$. Beals are pro)ided and a trip to a near(y to%n is organised. This ena(les the ouples to get out of the house! so ialise and share their e5perien es (ut it also ser)es as a )ery gradual introdu tion to day are. .iving at homeC safet: issues and preventing a;use *aintenance in the home and supervision <*A.A.$A-E@

4sing faulty household applian es or trying to ta&e are of s$all $aintenan e :o(s around the ho$e an (e dangerous for people %ith de$entia and e)en lead to a idents. 3n @u5e$(ourg there is a ser)i e! o)ered (y the long-ter$ are insuran e! %hi h ensures the $aintenan e of household e6uip$ent for dependent people %ho an no longer $anage su h tas&s the$sel)es. 'i$ilarly! in Balta! the Baltese Depart$ent for the Elderly organises a handy$an ser)i e offering a range of "0 different repair :o(s. Eo%e)er! faulty applian es and poor ho$e $aintenan e are not the only sour e of danger. Be$ory loss! onfusion and loss of apa ity an all lead to the need for e5tra super)ision. This is possi(le in @u5e$(ourg and #er$any through the long-ter$ are insuran e syste$ (ut often the a$ount of super)ision pro)ided is ne)ertheless insuffi ient. Tele=alarm monitoring s:stems <#8A*A.@

2*

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

Tele-alar$ syste$s! %hi h an (e used (y people %ith de$entia! are a)aila(le in se)eral ountries. 3n Den$ar&! they are pro)ided free of harge (y $uni ipalities. 3t is i$portant to ensure that the syste$ an (e easily used (y people %ith de$entia. 3n Balta! a syste$ has (een designed %hi h the Balta Al/hei$er 'o iety onsiders suita(le for people %ith de$entia. 8eeping a friendl: watch on elderl: people <*A.@

3n 1C82! a harita(le organisation in Balta 17aritas2 set up a 8good neigh(our s he$e9. 3t in)ol)es e)ery elderly person (eing )isited! assessed and in)ited to ta&e part in this free ser)i e. 3f the elderly person %ishes! )olunteers %ill $oti)ate neigh(ours %ho then &eep a friendly and regular %at h on the elderly person. 'o$e neigh(ours pro)ide a tual assistan e %hereas others si$ply alert the rele)ant authorities to the possi(le need for ser)i es. ?urther$ore! spe ially trained personnel deli)ering 8$eals on %heels9 in6uire %hether the person needs anything and &eeps an eye on the ho$e en)iron$ent. They are e5pe ted to report anything unusual to the ser)i e organi/ers. =hilst the pri)a y of the ser)i e user $ust (e prote ted! this $ay help dete t ases of a(use! negle t or si$ply the need for additional ser)i es. Alternative living arrangements <-E@

3n #er$any! 8=ohnge$eins haften9 1li)ing o$$unities2 are no% (eing set up for people %ith de$entia. 3n the past! this &ind of li)ing arrange$ent %as $ainly for students. @i)ing in a =ohnge$eins haft in)ol)es * to 8 people sharing an apart$ent or house. Ea h person has hisDher o%n roo$ and shares o$$on fa ilities. 3f support and ser)i es are needed! they an (e pro)ided in the for$ of ho$e are %here(y ertain needs 1e.g. for leaning! helping prepare food et .2 an (e pooled (ut indi)idual needs are ne)ertheless also $et. There is no per$anent li)e-in arer (ut round-the- lo & are an (e oordinated if needed. 7arers are e5pe ted to play an a ti)e role in the daily li)es of the inha(itants as the =ohnge$eins haft is onsidered as the a tual ho$e of the inha(itants and not as residential are. 7osts an (e partly refunded under the long-ter$ are insuran e. Support for people from minorit: groups and those living in rural areas

Support for people with dementia and carers from ethnic minorities <-EASCOTAC3@

3n reased $o(ility %ithin Europe has resulted in $any people gro%ing old in ountries %hi h are not their o%n. This is a trend %hi h is li&ely to ontinue. Eo%e)er! spe ifi support for people %ith de$entia and arers fro$ ethni $inorities andDor %ho are e5patriates is s are and pat hy. 3n #er$any! so$e organisations ha)e de)eloped guidelines on ho% to pro)ide are in a %ay %hi h respe ts the ultural (a &ground of parti ular groups of people. ,thers ha)e a ti)ely tried to rea h the Tur&ish and Busli$ o$$unities. As ethni $inorities often li)e in spe ifi lo alities rather than (eing unifor$ly distri(uted throughout a parti ular ountry! $easures are often lo ally (ased and so$eti$es led (y 7hur h organisations and o$$unity groups.

2"

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

Al/hei$er ' otland pu(lishes infor$ation in se)eral languages (ut also offers a spe ifi Aolish and 4&rainian infor$ation and ad)i e ser)i e in one parti ular area of ' otland. 3n '%it/erland! there are t%o nursing ho$es for spe ifi groups of people %ith de$entia one for people %ith de$entia fro$ @atin ountries and the other for Je%ish people %ith de$entia.

Support for les;ian7 ga:7 ;isexual and transgender carers <EN-@

7aring for so$eone %ith de$entia is a hallenging tas& that often leads to isolation and stress. Ieing les(ian! gay! (ise5ual or transgender 1@#IT for short2 an so$eti$es $a&e finding support e)en harder. The @#IT 7arers group %as set up (y the Al/hei$er0s 'o iety in 1CC8. 3t no% has a telephone support ser)i e operated (y gay $en and les(ian %o$en! a do%nloada(le ne%sletter and an 8in lusion tool&it9 %hi h ontains infor$ation a(out the group! its ser)i es! ad)i e on hoosing residential are and infor$ation on legal issues. The #roupMs )olunteers are also in reasingly (eing used to ad)ise ser)i e pro)iders on %ays in %hi h to a hie)e di)ersity and in lusion %ithin their o%n situations. Novel approaches to service provision in rural areas <S1ANO"ASCOT@

.ural and isolated areas often la & the stru tures %hi h are ne essary to pro)ide $u h needed ser)i es. <o)el approa hes are therefore needed su h as the $e$ory lini (us %hi h tours around @apland offering $e$ory testing and ounselling ser)i es. Assistan e or super)ision ta&ing $edi ation is la &ing in a fe% ountries and is not unifor$ly pro)ided in $any. 3n <or%ay! ho%e)er! assistan e ta&ing $edi ation is onsidered $ore satisfa tory in rural areas than in to%ns %ith people so$eti$es re ei)ing t%o )isits and a telephone all per day to ensure that they ta&e their ta(lets. There are day are entres in the rural areas of ' otland (ut $any find it diffi ult to sur)i)e finan ially. ,ther diffi ulties in lude a la & of appropriate )enues! a shortage of appropriate people to pro)ide the ser)i e and the population (eing thinly dispersed o)er a large area. This re6uires reati)e options! su h as Al/hei$er ' otland0s day are that is pro)ided in the sitting roo$s of (ed and (rea&fast a o$$odation %hen there is a suffi ient nu$(er of people re6uiring this ser)i e %ithin a $anagea(le geographi al area. *easure to ensure respite for carers

"espite care in the home <9EA-E@

3n parts of Ielgiu$! there is a ser)i e %hi h in)ol)es su(stitute arers staying in a person0s ho$e fro$ " to 1+ days in order to pro)ide respite for arers. The role of the su(stitute arer is to not only to pro)ide are (ut also to spend ti$e e)aluating the re$aining apa ities of the person %ith de$entia and re ording nota(le e)ents and strategies adopted. This infor$ation is then passed on to the arer on hisDher return and the su(stitute arer $ight also suggest inter)ention strategies adapted to the indi)idual ho$e situation. 3n so$e parts of #er$any! net%or&s of trained and super)ised )olunteers ha)e (een set up to pro)ide so ial support in the ho$es of people %ith de$entia at the re6uest of arers. 'u h support $ight! for e5a$ple! in)ol)e pro)iding o$pany and on)ersation or ta&ing the person for %al&s et . The ser)i e also pro)ides support andDor respite to arers. The )olunteers

28

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

re ei)e a s$all pay$ent for any osts they $ay ha)e in urred (ut this is (elo% the le)el of nor$al %ages. 3ome=;ased respite care at night <9E@

3n the Ant%erp region of Ielgiu$! there is a $o(ile night are at ho$e ser)i e. Arofessional arers! $anaged (y a oordinator! pro)ide support! o$fort and are t%o or three ti$es a %ee& (et%een 21.30 and 0*.30 to people %ith hroni illnesses! Al/hei$er0s disease or at the end of life. This is finan ed (y the ?le$ish go)ern$ent of Ielgiu$. A ho$e are ser)i e pro)ider (ased in Dun&ir& 1?ran e2 spe ialises in pro)iding (rief inter)entions at night of no longer than 30 $inutes %hi h o$ple$ent other ser)i es and support those already in pla e. The ser)i e is e5tre$ely fle5i(le. Fisits an (e organised on a fi5ed and regular (asis! as re6uired or %hene)er there is an e$ergen y. Bost )isits are to help people to go to sleep! to get up! to get ready and :ust to he & that all is %ell. 1inancing or providing a su;stitute carer <-EANO@

3n #er$any! people %ith de$entia are entitled to E4. 1!+32 per year under the long-ter$ are insuran e to pay for a repla e$ent professional or infor$al arer 1not a lose relati)e2 %hilst their usual arer is a(sent or on holiday. A ording to the Deuts he Al/hei$er #esells haft! this only o)ers a(out t%o %ee&s0 su(stitute are (ut is ne)ertheless a $easure %hi h an help arers organise a short (rea&. 3n <or%ay! under the 'o ial 'er)i es A t! arers in need of respite are entitled to a t%o-%ee& (rea& during %hi h ti$e the person %ith de$entia is te$porarily ta&en into residential are. Specific services and support to people with dementia and carers

0ersonal care <SCOT@

3n ' otland! free personal are is pro)ided to people o)er the age of *5 %ho ha)e (een assessed as needing it. Aeople %ith de$entia under the age of *5 %ould still (e entitled to su h support (ut it %ould (e $eans tested. Doint ps:chological support for people with dementia and carers <1"@

Joint psy hologi al support for arers and people %ith de$entia! pro)ided at ho$e (y psy hologists! has pro)en (enefi ial in the 3sLre region of ?ran e. The organisers lai$ that it has resulted in a redu tion in the le)el of an5iety! onfli t and tension (et%een people %ith de$entia and arers %hi h in turn i$pro)es (oth 6uality of life and the are relationship. Stress management and relaxation workshops <1"@

3n the Eaute-'a)oie region of ?ran e! stress $anage$ent %or&shops ha)e (een organised to help arers understand! re ognise and ontrol stress. Aarti ipants also ha)e the opportunity to $eet and e5 hange e5perien es %ith other arers. This is follo%ed (y a rela5ation session in luding e5er ises on on entration and (reathing. The %or&shop ends on a so ial note! %ith parti ipants and instru tors sharing a $eal together.

2C

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

Com;ined crisis intervention unitAwinter garden <1"@

The lini al gerontologi al depart$ent of a hospital in 'aint-Etienne 1?ran e2 has reated a %inter garden for people %ith de$entia %ho ha)e (een ad$itted due to a risis situation. The garden! %ith its fountain and plants! has a al$ing effe t on patients and help redu e an5iety and tension. 7arers also (enefit fro$ the al$ en)iron$ent. The garden ser)es as a &ind of transitory pla e (et%een hospital and ho$e! and pro)ides an ideal en)iron$ent for professionals to resol)e the risis situation and to find out %ith arers %hat $ight ha)e triggered the risis.

Support for the d:ing <.$A-E@

The asso iation ,$ega C0! %hi h is finan ed (y the @u5e$(ourg Binistry of ?a$ily! is $ade up of se)eral organisations in luding! a$ongst others! the .ed 7ross and 7aritas. 3t has a helpline operated (y professionals and pro)ides training to the )olunteers %ho )isit dying people and their fa$ilies in hospital and at ho$e. 3n order to ensure that )olunteers are appropriately trained! the #er$an Al/hei$er Asso iation 1Al/hei$er #esells haft2 and the #er$an Eospi e Asso iation 1Eospi/ #esells haft2 re ently :oined for es in order to pro)ide de$entia-spe ifi training for hospi e )olunteers.

30

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

-lossar:7 acknowledgements and ;i;liograph:

-lossar:
Social support: The ter$ 8so ial support9 should (e understood as referring to resour es andDor ser)i es %hi h are pro)ided to arers and people %ith de$entia to help the$ ope %ith the onse6uen es of the disease on their daily li)es. This ould in lude psy hologi al! so ial! physi al and finan ial support! as %ell as )arious types of are su h as palliati)e are! nursing are and respite are! and are fa ilities su h as nursing ho$es and day are entres. The ter$ is also used to refer to nursing are insofar as it relates to de$entia e.g. dealing %ith (edsores! in ontinen e or ta&ing ta(lets. =e realise that the definition of so ial support $ay differ onsidera(ly fro$ one ountry to the ne5t (ut it is the definition %hi h %as used in the Euro ode sur)ey upon %hi h the re o$$endations in this do u$ent are (ased. Carer The ter$ 8 arer9 is used to refer to infor$al arers e.g. relati)es and friends %ho ta&e are of a person %ith de$entia. 7are is usually pro)ided on a )oluntary (asis %ithout pay$ent although so$e arers $ight not feel that they a tually had any hoi e in (e o$ing a arer and so$e $ight re ei)e so$e for$ of pay$ent fro$ the 'tate for the are they pro)ide. The ter$ does not refer to professional arers su h as do tors! nurses! so ial %or&ers and ho$e are %or&ers et .

Acknowledgements
=e %ould li&e to than& the $e$(ers of the %or&ing group on so ial support to people %ith de$entia and arers for their ontri(ution to%ards the %riting of this report and these re o$$endations: 7ristian Bihai Ao$oha i! Al/hei$er Asso iation of .o$ania Dianne #o)e! Al/hei$er Europe ?ederi o Aaler$iti! ?ondation BJdJri Al/hei$er! ?ran e Eans-JNrgen ?reter! #er$an Al/hei$er Asso iation Julie ?raser! Al/hei$er Europe @etitia Do(rani i! .o$anian Al/hei$er 'o iety @ouise B 7a(e! 'tirling 4ni)ersity! 4nited Kingdo$ Baria do .osOrio Pin &e dos .eis! Aortuguese Al/hei$er Asso iation 'a(ine Eenry! @a @igue Al/hei$er! Ielgiu$ 'ir&&aliisa Eei$onen! Age 3nstitute! ?inland

31

Alzheimer Europes recommendations on the provision of social support to people with dementia and carers

9i;liograph:
Al/hei$er Europe 1200*2! Dementia in (urope 3earboo. 2445! Al/hei$er Europe Al/hei$er Europe 1200"2! Dementia in (urope 3earboo. 2447! Al/hei$er Europe Al/hei$er Europe 1200"2! 'ur)eys returned fro$ ea h $e$(er asso iation and e5ternal e5perts in the onte5t of the Euro7oDe pro:e t Al/hei$er Europe 120082! *uidelines on the good end/of/life care of people #ith dementia ! Al/hei$er Europe #uisset-Bartine/! Barie-Jo 1200"2! 6are and 'upport for 2eople #ith Dementia7 a 1e# Deal! ?ondation BJdJri Al/hei$er

32