A dvances in Metho dology and Statistics , 2023, 20 (2), 109–124. https://doi.org/10.51936/gmuf2033
A map of long-term car e for p e ople with dementia at the
le v el of lo cal communities: The ne e ds of p e ople with
dementia and the vision of car e
Jana Mali
Univ ersity of Ljubljana, Faculty of So cial W ork, Ljubljana, Slo v enia
Abstract
Long-term car e for p e ople with dementia has b e en studie d using the Rapid A ssessment of
Ne e ds and Ser vices metho d, which has b e en use d to map long-term car e ne e ds in or der to
stimulate the de v elopment of car e that effe ctiv ely me ets the ne e ds of p e ople with dementia.
In this pap er , w e pr esent the r esults of thr e e fo cus gr oups with ke y stakeholders in long-term
car e for p e ople with dementia in thr e e sele cte d communities, inv olving 29 p e ople fr om a
variety of organisations: so cial w ork centr es, homes for the older p e ople , health centr es,
general and psy chiatric hospitals, municipalities and non-go v ernmental organizations.
Qualitativ e analysis of the empirical material sho w e d that the follo wing pr oblems ar e
pr e valent in the communities: (i) acute and unmet ne e ds of informal car egiv ers, (ii) a
multi-tier e d system of long-term car e that puts p e ople in an une qual p osition, (iii) a lack of
community-base d long-term car e , and inade quate r esp onses to the ne e ds of p e ople with
dementia. Ev en in communities wher e ther e ar e various forms of supp ort, b oth institutional
and community-base d, available acr oss all ser vice se ctors, long-term car e for p e ople with
dementia is base d on informal car e . W e pr op ose the de v elopment of a national strategy for
family car egiv ers, with sp e cial attention to informal car egiv ers of p e ople with dementia.
The supp ort offer e d by e xisting facilities is inade quate , p o orly accessible , or none xistent.
Homes for older p e ople ar e o v er cr o w de d, and p e ople with dementia wait months or y ears to
b e admitte d to a home . Home-base d assistance is not e v enly distribute d acr oss communities,
and its scale (20 hours p er w e ek) in particular is insufficient to me et the ne e ds of p e ople
with dementia. Ther e is a lack of alternativ e forms of car e that enable p e ople with dementia
to r emain in their o wn home envir onment for as long as p ossible , for e xample in the form
of p ersonal assistance . W e suggest that the de v elopment of long-term car e for p e ople with
dementia should b e base d on the pr op ose d r esear ch metho dology .
K e y w or ds: community car e , older p e ople , Rapid A ssessment of Ne e ds and Ser vices
Email addr ess: jana.mali@fsd.uni-lj.si ( Jana Mali)
ORCID iD: ( Jana Mali)

110 Mali
1. Intr o duction
Long-term car e is driv en by a numb er of so cial pr o cesses, the most pr ominent of which ar e:
demographic change , ageing of p opulation with concurr ent de cline in the shar e of y oung
p e ople , life e xtension, me dical advances, a de clining shar e of w orking age p opulation, and
an incr easing shar e of p e ople who ar e dep endent on other p e ople ’s help . The incr ease in life
e xp e ctancy also brings with it various risks that ar e sp e cific to older p e ople ( e .g., diseases,
p o v erty , so cial e xclusion). One of the risks that pr esents many changes for old p e ople and
their so cial netw orks is dementia. The conse quences of dementia tackle health and so cial
issues, since the y affe ct the p e ople who hav e the disease and all those ar ound them, and
ther efor e hav e a pr ofound impact on p e ople ’s daily liv es and their r elationships with each
other .
Studying the so cial asp e cts of dementia has b e en pr esent in international literatur e since
the 1980s, while r esear ching the so cial dimensions of dementia in the conte xt of long-term
car e is still a no v elty . In Slo v enia, r esear ch on the so cial dimensions of dementia is lagging
far b ehind that of other countries. In addition, ther e is no unifie d r esear ch on long-term car e ,
as ther e is only partial r esear ch on age-r elate d issues available that is scatter e d acr oss various
univ ersities and institutes. In or der to fill in b oth gaps, the r esear ch pr oje ct Long-term car e of
p e ople wi th dementia in so cial w ork the or y and practice
1
has fo cuse d its scientific r esear ch
on long-term car e of p e ople with dementia, base d on the concepts of so cial w ork as a science
and a discipline that op erates at the interse ction of tw o inter disciplinar y themes—dementia
and long-term car e .
The situation of p e ople with dementia is highly marginalise d at various le v els of so cial
action—at the micr o le v el of the so cial and p olitical system, at the meso le v el of formal and
informal forms of help in the community , and at the micr o le v el, in r elationships b etw e en
p e ople with dementia and so cial netw orks. The tw o pie ces of r esear ch that w er e conducte d
in smaller municipalities in Slo v enia on the ne e ds and ser vices of long-term car e (Mali
& Gr eb enc, 2019 ; Mali et al., 2019 ) hav e sho wn that that the pr ofessionals—pr o viders of
long-term car e—b elie v e that the car e for p e ople with dementia is ade quately pr o vide d only
in institutions. The fact that the pr ofessionals ar e not the change catalysts in the situation of
p e ople with dementia raises concerns, as the y se e p e ople with dementia as a sp e cial gr oup
for whom institutional car e is for ese en. Such orientations ar e at o dds with contemp orar y
tr ends in the car e of p e ople with dementia, which ar e base d on community car e (Gauthier
et al., 2022 ; W orld Health Organization, 2017 ).
Giv en that in Slo v enia the system of long-term car e is still under-de v elop e d, the cur-
r ent funding system, the cultur e of car e and the lack of integrate d ser vice system make
community car e p ossible mainly for those with less intensiv e ne e ds (F laker et al., 2015 ),
which, due to the characteristics of dementia as a disease do es not inv olv e p e ople with
dementia. The intensiv e p ersonalise d ser vices that b est r esp ond to users’ ne e ds ar e either
under-de v elop e d (p ersonal assistance , p ersonal plans and ser vice packages), inade quately
r egulate d or insufficiently intensiv e ( home car e , field w ork). In addition, the community
ser vices ar e o v er-typifie d ( dominate d by r esidential gr oups and day centr es) or lack div ersity .
For these r easons, our pr oje ct aime d to inv estigate the characteristics of long-term car e
for p e ople with dementia. Using the Rapid A ssessment of Long- T erm Car e Ne e ds and
Ser vices (Mali & Gr eb enc, 2021a ), the maps of long-term car e hav e b e en de v elop e d that
1
The pr oje ct Long- T erm Car e of Pe ople with Dementia in the The or y and Practice of So cial W ork ( Grant
No . J5-2567) was co-finance d by the Slo v enian Resear ch And Inno vation A gency .

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 111
allo w further de v elopment of long-term car e for p e ople with dementia. In the long-term
car e maps, the e xp eriences of p e ople with dementia and the e xp eriences of formal and
informal long-term car e pr o viders play a central r ole and hav e a r ele vance; the y ar e use d
as a basis to impr o v e e xisting long-term car e and to de v elop ne w ser vices and metho ds of
help (Mali & Gr eb enc, 2021b ).
In this pap er , w e pr esent the r esear ch r esults in thr e e sele cte d municipalities, wher e ,
base d on the fo cus gr oups with ke y play ers in the pr o vision of long-term car e for p e ople
with dementia, w e hav e drawn up a map of long-term car e that also pr o vides a vision of long-
term car e and guidance for lo cal authorities in taking r esp onsibility for the de v elopment of
long-term car e .
2. The r ole of lo cal communities in pr o viding and de v eloping long-term car e for
p e ople with dementia
In Slo v enia, long-term car e is not y et a system in its o wn right, although the long-awaite d
Long- T erm A ct has b e en in place since the end of 2021. For the implementation of long-term
car e , various strategic do cuments, such as r esolutions or strategies, ar e still r ele vant. For
the purp ose of our r esear ch, the Resolution on the National Pr ogramme of So cial Pr ote ction
for the p erio d 2022–2030 (ReNPSV22–30; Official Gazette of the Republic of Slo v enia, 2022 ,
p . 3026) has b e en e xamine d, since the Strategy of Dementia Management in Slo v enia (Petrič
et al., 2016 ) e xpir es in 2020, while a ne w one has not y et b e en adopte d. Thus, this r esolution
is curr ently the most r ele vant strategic do cument in the field of long-term car e for p e ople
with dementia.
The Resolution stipulates that the State giv es lo cal communities considerable p o w ers in
the ar ea of old p e ople ’s car e . The intr o ductor y pr o vision is of ke y r ele vance as it makes clear
that in the conte xt of so cial p olicy , the lo cal authorities, along with the State , ar e r esp onsible
to pr o vide help and supp ort to individuals and families who ar e not able to pr o vide so cial
se curity for themselv es. The central challenges of so cial p olicy (Official Gazette of the
Republic of Slo v enia, 2022 , p . 3026) sp e cify the ageing of p opulation and, in this conte xt,
the rapid incr ease in the numb er of p e ople with dementia—which has double d in Slo v enia
o v er the last tw enty y ears. The guidelines for de v eloping forms of help for p e ople with
dementia hav e b e en set, such as day car e , as w ell as guidelines for de v eloping supp ort for
r elativ es and other informal car ers. In addition, the supp ort in de v eloping ne w forms of
accommo dation is e xp e cte d, since smaller r esidential units ar e to b e de v elop e d ne xt to old
p e ople ’s homes, pr o viding accommo dation for up to 24 users in a single unit. The sp e cific
r ole of lo cal communities in this de v elopment has not b e en e xplicitly define d. It is likely that
the municipalities will continue e xisting practice in the de v elopment and implementation
of so cial home car e , as the Rules on So cial Ser vices Price Formation Metho dology (Official
Gazette of the Republic of Slo v enia, 2006 , p . 9373) stipulate that the municipalities ar e
oblige d to finance this ser vice at the rate of at least 50 % of the final price . In addition,
the municipalities ar e oblige d to pay e xtra for this ser vice for those citizens who cannot
financially affor d it. The municipalities also pay up or pay in full for institutional car e for
the less financially able old p e ople , including p e ople with dementia.
Municipalities ar e also e xp e cte d to play a r ole in the de v elopment of community-base d
forms of long-term car e . The general guidelines of the 2030 Resolution establish a 1:1 ratio
in users of community forms and institutional forms. This means that for e v er y user of
community forms, ther e will b e one user of institutional forms of so cial car e . Pe ople with
dementia ar e not e xplicitly mentione d in this conte xt, ho w e v er , it is b elie v e d that the y ar e
include d in this ratio as the y ar e curr ently among the most institutionalise d p e ople in the

112 Mali
countr y . In this r esp e ct, Slo v enia do es not differ much fr om other countries. Charlesw orth
( 2014 ), for instance , states that the institutionalisation of p e ople with dementia incr eases
with age , r eaching 27 % in the 65–74 age gr oup and 61 % in the 90+ age gr oup . In the latter
age gr oup , ther e ar e v er y fe w opp ortunities for informal car e of partners, ther efor e , car e ,
particularly in the advance d stages of dementia, is taken o v er by formal car e pr o viders.
The Resolution’s guidelines highlighting the de v elopment of community-base d car e ar e
up-to-date , the y follo w the global guidelines of dementia car e (W orld Health Organization,
2017 ) and the wishes of old p e ople . Leichsenring et al. ( 2013 ) sp e cify the r esults of a Eur op ean
r esear ch sho wing that the majority of Eur op eans se e institutional car e as the last in a series
of forms of car e that the y w ould like to r e ceiv e . The y r eje ct r esidential car e b e cause the y
want to liv e in a home envir onment for as long as p ossible , e v en if that means the y will b e
dep endent on other p e ople ’s help . It is essential that p e ople ’s wishes ar e r esp e cte d and taken
into account by de cision-makers at the lo cal and national le v els, which will only encourage
the de v elopment of ne w ser vices and forms of long-term car e in Slo v enia as long-term
car e is highly institutionalise d. Interme diate forms of help ( b etw e en community-base d
and institutional car e), such as day car e and various forms of community car e , ne e d to b e
de v elop e d (Mali, 2013 ). At the national le v el, the changes ar e ne e de d in terms of pr o viding
conditions for integrate d health and so cial car e , supp ort for informal car ers, various forms
of r ehabilitation, as w ell as pr oactiv e action to pr e v ent long-term car e (Fortinsky , 2014 ;
Naiditch et al., 2013 ).
For some municipalities, such tasks will pr esent ne w challenges, since the y go b e y ond
the curr ent forms of financial supp ort in some of the establishe d ser vices. It is not clear
whether the authors of the Resolution wishe d to implement the Sw e dish mo del of car e for
old p e ople , which, accor ding to T r y degår d and Thorslund ( 2010 ), has b e en transforme d
o v er the last tw enty y ears into a separate system of rights, pr o vide d on the one hand by
the state and on the other by a system of lo cal, de centralise d p olicies with ser vices to help
old p e ople , base d on lo cal, cultural and historical traditions. Certainly , municipalities ar e
confr onte d with ne w challenges that will b e difficult to tackle without a pr op er analysis
of the situation, ne e ds and wishes of p e ople with dementia and formal and informal car e
pr o viders. Designing long-term car e for p e ople with dementia, base d on the long-term car e
map as pr op ose d by Mali and Gr eb enc ( 2021b ) is a p ossible way for war d for lo cal authorities.
3. Metho ds
In this pap er , the r esults of thr e e fo cus gr oups with ke y actors in the pr o vision of long-term
car e for p e ople with dementia fr om thr e e sele cte d municipalities ar e pr esente d. The sele ction
of municipalities was base d on the r esults of the r esear ch pr oje ct Community-Base d Car e
for Older Pe ople in Slo v enia (Hleb e c et al., 2014 ), in which fiv e gr oups
2
of municipalities
w er e define d with r egar d to institutional and community-base d car e , namely municipalities
fr om Gr oups 2, 3 and 5. Gr oup 2 consists of small rural municipalities with mo derate quality
of car e for old p e ople: no institutional car e in the municipality with a mo derate availability
of so cial car e at home ( as this is mor e accessible also in the afterno on, during w e ekends and
holidays). Gr oup 3 consists of larger rural municipalities with a balance d quality of car e for
old p e ople: institutional car e is w ell-de v elop e d and the availability of so cial car e at home is
2
Gr oup 1: higher w elfar e—high quality of car e; Gr oup 2: higher w elfar e—p o or quality of car e; Gr oup 3:
lo w er w elfar e—p o or quality of car e; Gr oup 4: lo w er w elfar e—high quality of car e; Gr oup 5: Ljubljana and
Marib or: high availability of car e (fav ourable price)—no sufficient quality of car e . Se e mor e on defining the
gr oups of municipalities in Hleb e c et al. ( 2014 ).

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 113
mo derate . In Gr oup 5, ther e is one municipality that is characterise d by a go o d situation in
the field of institutional car e , as most of the r esidents stay in institutional car e within the
community due to the fact that ther e is so much institutional accommo dation available that
the y do not ne e d to mo v e to other places. The r esidents of the municipality ar e also w ell
place d in terms of financial contributions to so cial car e at home .
The de v elopment of long-term car e in the sele cte d municipalities may b e compar e d using
other indicators than the metho dology of Hleb e c et al. ( 2014 ). Mali and Gr eb enc ( 2021a )
pr op ose designing a map of long-term car e , as a r esult of r esear ch using the rapid ne e ds
and ser vices assessment metho d. The map consists of four ar eas: (i) pr esentation of the
municipality; (ii) e xisting forms and ser vices of car e; (iii) ne e ds of long-term car e; (iv ) vision
of long-term car e . Belo w , a brief comparison of the first tw o categories is pr esente d.
3.1. Pr esentation of municipalities
All thr e e municipalities ar e ge ographically close , lo cate d in the north-eastern part of Slo v enia,
in the Savinjska, K or oška and Po dravska statistical r egions. T w o of the municipalities hav e
the status of an urban municipality ( Gr oups 3 and 5), characterise d by the pr esence of a
to wn with at least 20 000 r esidents and at least 15 000 emplo yment p ositions, of which at
least half ar e tertiar y and quaternar y activities. The to wn is the ge ographical, e conomic and
cultural centr e of a wider ar ea (Official Gazette of the Republic of Slo v enia, 2007 , p . 12729).
A common featur e of all municipalities is that the older p opulation is gr o wing at a v er y
fast rate , on av erage faster than at the national le v el. In the municipality of Gr oup 2, the
shar e of p e ople age d 65 and o v er was 15.3 % in 2008, rising to 17.6 % by 2014 and 21.4 % in
2021 (Statistical Office of the Republic of Slo v enia, 2023 ). In the municipality of Gr oup 3,
ther e is an incr ease in the old p opulation as follo ws: in 2008 the shar e was 13.7 % , by 2014 it
was 15.6 % and by 2021 it incr ease d to 20.4 % . The municipality in Gr oup 5 had the highest
shar e of p e ople age d 65 and o v er in 2021, 23.3 % which is 2.4 % higher than the national
av erage (Statistical Office of the Republic of Slo v enia, 2023 ). The ageing inde x is higher for
w omen in municipalities in Gr oups 2 and 5 and higher than the national av erage , which
means that w omen in b oth municipalities ar e ageing faster than in Slo v enia as a whole . In
all thr e e municipalities, the shar e of p e ople age d 80 and o v er , who ar e usually the most
fr e quent users of long-term car e and who also hav e a higher pr e valence of dementia, is
incr easing, which further indicates the r ele vance of the de v elopment of long-term car e for
p e ople with dementia. The gr o wth of this p opulation gr oup is e xp e cte d to slo w do wn in
2020 and e v en de cr ease in 2021, as a r esult of the high mortality rate due to the Co vid-19
epidemic.
3.2. Existing forms and ser vices of car e
In all thr e e municipalities, long-term car e ser vices ar e found in thr e e se ctors—public, private
and non-go v ernmental. In addition to old p e ople ’s homes, the public se ctor comprises so cial
w ork centr es, health centr es, hospitals, centr es of so cial car e and day centr es. The private
se ctor is dominate d by old p e ople ’s homes and so cial ser vices. In the non-go v ernmental
se ctor , ther e ar e various asso ciations, ranging fr om p ensioners’ asso ciations and asso ciations
of p e ople with disabilities to the Re d Cr oss, Caritas and various self-help gr oups. The
municipality in Gr oup 5 has the largest numb er of various long-term car e pr o viders fr om
all thr e e se ctors, while the municipality in Gr oup 2 has no old p e ople ’s homes or hospitals.
The municipality in Gr oup 3 has a public old p e ople ’s home and a fe w asso ciations.
The r emaining tw o categories fr om the map of long-term car e , i.e . (iii) ne e ds in long-term
car e and (iv ) vision of long-term car e , w er e identifie d in the fo cus gr oups me etings, wher e

114 Mali
the ke y play ers in long-term car e fr om each municipality w er e invite d to participate . The
me etings w er e carrie d out in May and June 2022, as part of the r esear ch pr oje ct Long- T erm
Car e for Pe ople with Dementia in So cial W ork The or y and Practice . A total numb er of
participants was 29 and the y came fr om a variety of organisations: so cial w ork centr es,
old p e ople ’s homes, health centr es, general and psy chiatric hospitals, municipalities and
non-go v ernmental organizations (NGOs; p ensioners’ asso ciations, Sp ominčica—dementia
supp ort organisation, adult e ducation organisations). The follo wing questions w er e dis-
cusse d with them:
1. What ar e the ne e ds of p e ople with dementia that y ou p er ceiv e in y our w ork?
2. What ar e the tr ends in the amount of supp ort for p e ople with dementia in y our
municipality?
3. What is y our vision of helping p e ople with dementia?
The colle cte d r esp onses w er e analyse d using a qualitativ e data analysis metho d by Mese c
( 1998 ), as it is the most establishe d analysis of empirical material in so cial w ork. The analysis
is partly base d on the w ork by Glaser and Strauss (1967, as cite d in Mese c, 1998 ) and Strauss
and Corbin (1990, as cite d in Mese c, 1998 ) and is a pr o cess in which the concepts ar e
formulate d by categorising and classifying the units of material, r elating them to each other
and formulating the or etical e xplanations (Mese c, 1998 ). It is also pr op ose d for so cial w ork
by Alstone and Bo wles ( 2003 ).
Her e b elo w , the analysis of the empirical data colle cte d fr om the thr e e fo cus gr oups in
the municipalities mentione d ab o v e ar e pr esente d in or der to demonstrate the characteristics
of the ne e ds of p e ople with dementia and the vision of long-term car e for them.
4. Results
4.1. The ne e ds of p e ople with dementia and e xisting r esp onse within long-term car e
The first featur e of the map of long-term car e is the fact that high le v els of car e is on the part
of the family memb ers and close r elativ es. Long-term car e is base d on the informal se ctor
of help , b e cause the formal se ctor is not w orking or is in the pr o cess of br eaking do wn. It
was e xp e cte d that the participants w ould discuss the ne e ds of p e ople with dementia and
that w e w ould gain insight into the r eal users’ p ersp e ctiv e . Unfortunately , our e xp e ctations
w er e not met. The e xp erts’ narrativ es r eferr e d mor e to the r esp onse to the ne e ds in terms
of ser vices and forms of help for p e ople with dementia, rather than to the ne e ds of p e ople
with dementia. Ther e was a p er ceiv e d shift away fr om dir e ctly addr essing the distr ess and
pr oblems of p e ople with dementia, as the narrativ es primarily fo cuse d on pr esenting the
distr ess of family memb ers and close r elativ es who pr o vide car e for p e ople with dementia.
The informal car ers ar e p er ceiv e d by the r esp ondents as taking the lion’s shar e of the car e
and coming to them for help when the y ar e e xhauste d, at the end of their r op e and in an
urgent ne e d of various forms of r elief, including formal forms of long-term car e such as
r esidential car e , home car e , day car e or forms of me dical assistance , such as psy chiatric
hospital or old p e ople ’s home . On the other hand, as p e ople with dementia get older , so do
their informal car ers (partners, childr en and other family memb ers), and the y may alr eady
b e in ne e d of long-term car e themselv es.
Once again, informal car e pr o viders ar e b eing “ disco v er e d and r e cognise d” as an in-
disp ensable part of long-term car e , b oth in countries with a de v elop e d formal public car e
system (Northern Eur op ean countries) and in countries wher e long-term car e is base d on
informal car e (Southern Eur op ean countries) (Naiditch et al., 2013 ). Informal car ers (most
often partners, childr en and daughters-in-law ) ar e not only co-play ers in long-term car e ,
but also , as car ers, hav e sp e cific ne e ds and r e quir ements in their r ole ( e .g., as emplo y e es

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 115
in long-term car e). The y ar e a highly heter ogene ous gr oup , consisting of vulnerable old
p e ople (partners and childr en) and still activ ely w orking p e ople .
In the municipality of Gr oup 5, ther e is a shortage of vacancies in all formal forms
of long-term car e , so informal pr o viders of car e , such as childr en, the r epr esentativ es of
the middle generation, ar e for ce d to leav e their jobs and de v ote their time to pr o viding
car e for a par ent with dementia. The participants b elie v e that such practices sho w that
our long-term car e system is clearly not w orking. A ccor ding to Leichsenring et al. ( 2013 ),
ho w e v er , this is a featur e of most e xisting long-term car e systems. Long-term car e is and will
b e base d on informal car e , and the differ ences b etw e en systems ar e in the help and supp ort
the y hav e organise d for them. Charlesw orth ( 2014 ) argues that help and supp ort intende d
for informal car ers of p e ople with dementia should b e thr e efold: (i) informativ e ( advice
and kno wle dge), (ii) instrumental ( concr ete help , such as helping p e ople with dementia
with household chor es, shopping, transp ort and p ersonal assistance),and (iii) emotional
(r e cruiting confidants). In the municipality at hand, ther e is a shortage of all thr e e forms, so
the r elativ es turn to pr ofessionals at a time when the y ar e so e xhauste d fr om pr o viding car e
for a family memb er with dementia that admitting a p erson with dementia to a psy chiatric
hospital is a crucial form of r elief. Unfortunately , the y sho w this by cutting off contact
and car e for the family memb er , r esulting in the long-term hospitalisation of the p erson
with dementia, which is not the purp ose of psy chiatric hospitalisation, as the places for
longer-term hospitalisation ar e also e xtr emely scar ce . Mor e capacity is ne e de d in nursing
facilities, which hav e pr o v e d to b e a go o d solution for transferring p e ople waiting for a
mor e p ermanent form of car e , such as old p e ople ’s homes.
In all thr e e municipalities the ne e ds of r elativ es pr e dominate d and to ok pr e ce dence ,
e v en o v er the ne e ds of p e ople with dementia. The ne e ds of the p e ople with dementia w er e
not in the for egr ound of our discussions, mor e pr esent w er e the ne e ds of the informal
car ers. Informal pr o viders of car e se ek help in all forms of long-term car e available in
the municipality , ranging fr om sp e cial so cial car e institutions to day car e , and e v en in old
p e ople ’s self-help gr oups on ho w to help a p erson with dementia. Curr ently , in day car e
centr es ther e ar e mostly p e ople with dementia and it is obser v e d that the r elativ es ar e not
familiar with basic car e skills, such as dr essing, p ersonal hygiene , fe e ding assistance , etc.
Other forms of distr ess add up and the y ar e r elate d to the difficulty in coming to terms with
dementia, denial of the disease , etc. Financial distr ess is not uncommon, as e xisting so cial
car e at home is not sufficient and the y hav e to find and pay for additional forms of supp ort
if the y want their family memb er with dementia to stay at home .
The e xp erts obser v e that dementia is highly stigmatise d; ther efor e , the informal pr o viders
of car e cannot and do not want to r e cognise the signs of dementia. The y hide the fact that
their family memb er has dementia fr om themselv es and others. Formal pr o viders of car e
often hav e to first teach ab out the disease , its pr ogr ession, se eking appr opriate me dical help ,
b efor e the y can offer the help that the y do . The e xp e ctations of informal car ers ar e most
often not in line with the help offer e d, and ther e is a lack of acceptance of the disease . For
instance , the y e xp e ct 24-hour so cial car e assistance at home , which can only b e pr o vide d by
institutional car e . The y also obser v e violent b ehaviour on the part of the r elativ es, most
often in the form of tying their family memb er to a b e d and pr e v enting them fr om mo ving
ar ound the home so that the y w ould not put themselv es and other p e ople at risk when
the y ar e away . The e xp erts consider such b ehaviour to r efle ct the r elativ e ’s distr ess as the y
ar e unable to find additional sour ces of help . Inde e d, ignorance of the various forms of
assistance is v er y high among the r elativ es in the municipality , and mor e attention should
b e paid to informing them ab out the forms of long-term car e for p e ople with dementia.

116 Mali
The se cond featur e of the map of long-term car e is multi-tier e d system of long-term
car e . The r esp ondents b elie v e that long-term car e for p e ople with dementia ne e ds to b e
de v elop e d in an integrate d way , that curr ently , ther e ar e tw o systems that should w ork in
harmony and co or dination, but unfortunately this is not the case . The curr ent tw o-tier car e
system is unfair , putting users in an unfair p osition, as their fundamental rights under health
insurance ar e violate d. A typical e xample is the financing of car e in an old p e ople ’s home and
in a home , in the conte xt of so cial car e at home . “When old p ersons ar e admitte d to an old
p e ople ’s home , the y ar e entitle d to all the available ser vices—physiotherap y , o ccupational
therap y , nursing. If old p ersons stay at home , the y b enefit fr om home car e , while the y ne e d
to pay for all additional ser vices (Inter vie w 11)” , e xplains one of the r esp ondents. In this
way , w e ar e not pr omoting community car e , but rather dir e cting p e ople to institutions that
ar e traditionally taken and wher e the y wait for months or y ears for a vacancy (A sso ciation
of So cial Institutions of Slo v enia, 2023 ). One of the r esp ondents p oints out that “ther e ar e no
ser vices that w ould allo w p e ople to stay at home , in their home envir onment (Inter vie w 18). ”
So cial car e at home is so time-limite d that informal car ers do not opt for it at all. Curr ently ,
a p erson with dementia is entitle d to thr e e or four hours of home help a day , tw enty hours
a w e ek, which is significantly not enough for a p erson with advance d dementia.
The fact that the institutionalisation of long-term car e is actually incr easing is sho wn by
the data of the Health Insurance Institute of Slo v enia ( 2023 ), accor ding to which the capacity
of institutional car e is e xp e cte d to incr ease by 1129 places by the b eginning of 2023, all of
which ar e planne d to b e in the private se ctor , o wne d by the A ustrian private companies. For
users, this inno vation do es not bring ab out any change for the b etter in terms of accessibility
to ser vices, although the ne w capacities app ear in the gr oup of municipalities with the w orst
co v erage of institutional ser vices. Another pr oblem is that o v er the last thr e e y ears ther e
has b e en a de cline in inter est in w orking in r esidential car e b e cause it is a lo w-paid job
that is not value d in so ciety . In 2022, with lo w unemplo yment, the situation has b e come so
w orr ying that e v en emplo yment in the planne d ne w homes in 2023 is calle d into question.
Ther e ar e not many organise d forms of long-term car e for p e ople with dementia in the
municipality of Gr oup 3, but those that do e xist ar e e xtr emely div erse and fragmente d. In
addition, ther e is p o or co or dination b etw e en pr o viders, leaving p e ople with dementia and
their informal car ers fe eling uncomfortable , abandone d and distr esse d. These characteristics
p oint to a multi-tier e d long-term car e system (F laker et al., 2008 ), which is no longer base d
on a se ctoral division (public, private , NGO ), but has adde d a division b etw e en so cial and
health ser vices, lo cal and national pr o viders, which adds to opacity and p e ople ’s fe eling
of b eing ill-informe d. In the municipality of Gr oup 3, ther e ar e pr ogrammes for dementia
e ducation, so cial activities and v olunte ering, in addition to institutional car e in the old
p e ople ’s home , health car e in a general hospital, a patr onage ser vice , supp ort fr om a so cial
w ork centr e and so cial car e at home . The co op eration b etw e en the old p e ople ’s home , which
also pr o vides so cial car e at home , and the general hospital is v er y go o d. The co op eration
b etw e en the centr e of so cial w ork and the old p e ople ’s home is also go o d. Other forms of
co op eration should b e further str engthene d, as should the co or dination of various forms of
supp ort, since this w ould cr eate a clear er map of long-term car e for p e ople with dementia.
The thir d featur e of the map of long-term car e is the lack of community forms of car e
and inade quate r esp onse to the ne e ds of p e ople with dementia. The r esp ondents agr e e
that the curr ent long-term car e system do es not ade quately r esp ond to the ne e ds of p e ople
with dementia. Ther e is a lack of alternativ e forms of car e that w ould allo w p e ople with
dementia to stay in their home envir onment as long as p ossible . Some r esp ondents identifie d
family car ers (i.e ., informal car ers) as an alternativ e , which w ould allo w the curr ent informal

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 117
pr o viders of car e to b e fully emplo y e d for the duration of the p erson with dementia’s car e
in the home envir onment. Although the ke y motivations for informal car ers to pr o vide
car e ar e: the emotional b ond of lo v e and attachment b etw e en the users and the pr o viders
of car e , the sense of duty to pr o vide car e for a family memb er (Naiditch et al., 2013 ), our
r esp ondents also highlight the financial asp e ct. Namely , the informal car ers often face
se v er e financial distr ess. W omen ar e for ce d to leav e their jobs, stay at home and car e for a
family memb er with dementia. Naiditch et al. ( 2013 ) argue that on av erage w omen pr o vide
twice as many hours of help as men, with a pr e dominance of p ersonal supp ort, while men
fo cus on administrativ e tasks and logistics, which r e quir e less time inv olv ement. W omen’s
informal long-term car e is ther efor e alr eady sho wing signs of b e coming the dominant form
of help in the sele cte d municipalities.
Ther e is also a gr o wing ne e d to pr o vide car e for certain gr oups of p e ople with dementia
who hav e sp e cific ne e ds and for whom ne w forms of supp ort should b e de v elop e d. In this
conte xt, ther e ar e p e ople under 65 who suffer fr om dementia and for whom the curr ent long-
term car e system do es not pr o vide ade quate supp ort. The y ar e not ade quately cater e d for in
e xisting forms of long-term car e and ther efor e their ne e ds ar e not met. So cial car e at home
with 20 hours of help a w e ek is insufficient, the patients’ partners ar e often still w orking
and w ould ne e d mor e hours of help . For p e ople with alcohol-r elate d dementia, dementia
can o ccur b efor e the age of 60, at an age when the y ar e not eligible for institutional car e and
e xisting community car e is not r esp onding effe ctiv ely to their ne e ds. It is also not uncommon
for p e ople with dementia to b e subje cte d to violence , ther efor e , crisis accommo dation or
similar solutions w ould b e ne cessar y . This is not available in any municipality , which
is pr obably also a conse quence of what Naiditch et al. ( 2013 ) obser v e in their analysis of
Eur op ean long-term car e systems, when the y conclude that the user p ersp e ctiv e of old p e ople
and informal car ers is often o v erlo oke d in p olicy orientations and in the implementation of
concr ete practical help by pr ofessionals. It is not taken into account in the planning and
implementation of long-term car e , e v en though it is often enshrine d at a de clarativ e le v el in
various national guidelines. The r ole of so cial w orkers w orki ng in the field of long-term
car e for p e ople with dementia is certainly r ele vant her e . It is essential for them to adv o cate
in or der to guarante e human rights and de cent tr eatment for p e ople with dementia at the
le v el of pr ofessionals and lo cal communities’ action, in or der to cr eate an inclusiv e so ciety
for all gr oups of p e ople (Cahill, 2022 ).
Ne w forms of help and metho ds of car e also r e quir e mor e staff, and these hav e b e en a
ke y pr oblem in the de v elopment of long-term car e in the municipality for some time . Ther e
is alr eady a shortage of staff in e xisting forms of long-term car e and it is difficult to imagine
that ne w forms of long-term car e for p e ople with dementia could b e de v elop e d with e xisting
p ersonnel structur e . Thus, for a long time , ther e has b e en a system which, on the one hand,
has drawn attention to the incr ease d and unmet ne e ds of p e ople with dementia, while , on
the other hand, the shortage of staff in e xisting long-term car e system is so se v er e that its
functioning is thr eatene d. In many Eur op ean countries, the solution to p ersonnel pr oblems
is to r e cruit migrant w orkers. Be dnarik et al. ( 2013 ) obser v e that while migrant w orkers
complement the help of informal car ers, the latter ar e still o v erbur dene d despite formal help .
In 17 out of 23 Eur op ean countries, family memb ers r ep orte d that the y r ely on migrant
w orkers at least fr om time to time to actually b e able to pr o vide continuous supp ort and
enable the p erson with dementia to liv e at home (Barbar ella et al., 2016 ).
In the municipality of Gr oup 2, ther e ar e various forms of help for old p e ople avail-
able , b oth institutional and community-base d, but the y ar e all mor e or less organise d as
solutions for a heter ogene ous gr oup of older p e ople , which includes p e ople with dementia.

118 Mali
Unfortunately , the ne e ds of p e ople with dementia ar e v er y sp e cific and help in e xisting
forms of long-term car e ne e ds to b e adapte d. For instance , day car e is r e cognise d as a go o d
form of help that pr olongs the life of p e ople with dementia in their home envir onment,
but at the same time r epr esents gr eat distr ess for them. Ev er y w orking day , the y mo v e
fr om their home envir onment to a ne w one for the duration of the informal car ers’ w orking
sche dule , which is a big change for them and a huge str ess that the staff at the centr e hav e
to deal with in their daily r outines and rituals. The sche dule of daily activities accor ding to
a w ell-define d timetable giv es them a sense of se curity , stability and p eace .
So cial car e at home is not sufficient to pr o vide car e for p e ople with dementia, b e cause it
is limite d to 20 hours a w e ek. It is obser v e d that the ne e ds of p e ople with dementia who do
not hav e r elativ es and close family memb ers to pr o vide additional car e alongside organise d
so cial car e at home r emain unmet. A p erson with dementia living alone at home do es not
e v en r e ceiv e help with taking me dication, as none of e xisting long-term car e ser vices pr o vide
such help . Nor , for instance , ar e the y able to guide the p erson with dementia to pur chase and
use appr opriate aids such as w e ekly me dication b o xes and similar me dication disp ensers.
Pe ople with dementia who liv e alone or do not hav e family memb ers or acquaintances
to car e for them ar e a particularly vulnerable gr oup . The y ar e 20 times mor e likely to b e
institutionalise d than p e ople with dementia living with r elativ es (Charlesw orth, 2014 ).
Curr ently , the most pr essing pr oblem in the municipality of Gr oup 3 is the pr o vision
of ade quate nutrition at home for p e ople with dementia. This ne e d is p er ceiv e d by all
ser vices in the ar ea, since the only pr o vider to deliv er home-deliv er e d meals is a cater er
who pr o vides home deliv er y , but not do es not b other to che ck whether the p erson with
dementia actually consumes the fo o d. Fo o d deliv er y ser vice should b e de v elop e d and fe e ding
assistance pr o vide d for p e ople with dementia. The solutions ar e se en in mobilising the so cial
envir onment, particularly the v olunte ers fr om the neighb ourho o d and neighb ours, who
could take a v er y human appr oach to helping p e ople with dementia. T o tackle such a primar y
ser vice as fo o d distribution and fe e ding assistance , no large financial inv estments ar e ne e de d,
only the mobilisation of dormant r esour ces and the pr omotion of human solidarity and
help among p e ople . Ne v ertheless, the first thing to do is to e ducate the community ab out
dementia and w ork on the destigmatisation of p e ople with dementia in so ciety .
4.2. Vision of long-term car e for p e ople with dementia
The first featur e of the map of long-term car e: T o make e xisting and kno wn forms of
long-term car e fully op erational so that ne w ones can b e de v elop e d. The vision of long-term
car e for p e ople with dementia is se en by r esp ondents as a r einfor cement of e xisting formal
forms of help , so that p e ople actually get help fr om ser vices and facilities that the y cannot
get at the moment b e cause the y ar e waiting for them. Ther e should b e an incr ease in the
numb er of so cial home car e pr o viders, mor e temp orar y car e and day centr es for p e ople
with dementia.
Ne w forms of help should b e de v elop e d along with ne w ser vices and ne w metho ds of
w orking with p e ople with dementia. The ne w ser vice that is most fr e quently mentione d
is p ersonal assistance for p e ople with dementia. Legislation alr eady pr o vides for p ersonal
assistance for y ounger p e ople with dementia, but this w ould b e the most appr opriate car e
for all age gr oups of p e ople with dementia. This is pr ompte d by the distr ess of r elativ es
who come to pr ofessionals so e xhauste d that the y ne e d 24-hour , r ound-the-clo ck help
fr om formal car ers. If w e want to str engthen the liv es of p e ople with dementia in their
home envir onment, p ersonal assistance is the b est solution. Extending life in the home
envir onment is also made p ossible by various information and communications te chnology

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 119
solutions that p e ople ar e to o little awar e of. Ther e is alr eady a range of sensors on the market
( e .g., smoke , water , motion, gas) that ar e affor dable and pr o vide a safe living envir onment
for p e ople with dementia. T ele-assistance should also b e de v elop e d, but for p e ople with
dementia this can b e a supp ort in their home envir onment, as p ersonal and dir e ct human
contact is irr eplaceable for p e ople with dementia.
The lo cal authorities should take on a co or dinating r ole , linking and integrating e xisting
pr o viders into a single long-term car e system to eliminate the undue comp etition b etw e en
NGOs for funding, as p e ople with dementia ne e d various forms of supp ort. Solutions should
also b e systematise d, as the long-term car e system for p e ople with dementia cannot b e
base d on the v oluntar y se ctor .
The se cond featur e of the map of long-term car e: Personnel conditions do not allo w
long-term car e to function and de v elop . Refle cting on a vision for long-term car e for p e ople
with dementia cannot take place without finding solutions to the p ersonnel constraints,
which at the moment ar e v er y gr eat inde e d. Ther e ar e no w orkers available to w ork in
long-term car e , and e v en fe w er who want to w ork with p e ople with dementia. The e xisting
staff is o v erloade d with administrativ e tasks, which means that ther e is no time for dir e ct
contact with the users. V er y so on, the solutions will hav e to b e found to r elie v e e xisting
staff of administrativ e w ork, other wise e v en those who ar e curr ently emplo y e d will leav e .
The payment for w orking with p e ople with dementia ne e ds to b e r egulate d, and de cent
wages ne e d to b e paid to staff to sho w that their w ork is r eally imp ortant and ne cessar y .
The emplo y e es must b e giv en the opp ortunity to acquir e the skills to w ork with p e ople with
dementia and b e traine d appr opriately in this ar ea of w ork.
The thir d featur e of the map of long-term car e is oriente d to war ds the de v elopment of
sp e cialise d forms of long-term car e for p e ople with dementia. In the municipality of Gr oup 2,
wher e ther e ar e curr ently fe w sp e cialise d forms of help for p e ople with dementia, the y ar e
thinking in particular ab out ho w to str engthen the e xisting offer of help for old p e ople
with ne w ser vices. Ther e ar e tw o typ es of pr op osals: (i) forms of help and ser vices that ar e
familiar in other municipalities acr oss Slo v enia and (ii) ne w ones, base d on solutions fr om
abr oad. The first typ e of ne w forms of help could b e de v elop e d by e xisting pr o viders who
alr eady pr o vide long-term car e for old p e ople but hav e not y et de v elop e d sp e cialise d forms
of help for p e ople with dementia. One e xample is an NGO that organises self-help gr oups for
old p e ople . T w o gr oups could b e set up in a v er y short time , one self-help gr oup for p e ople
with dementia and one gr oup for r elativ es who pr o vide help for p e ople with dementia.
Ther e is a so cial car e council at the municipality which could include long-term car e for
p e ople with dementia as a ne w topic. The me eting pr omise d to supp ort the establishment
of dementia-friendly p oints set up by the NGO Sp ominčica.
The se cond typ e is day car e for p e ople with dementia, which will hav e to b e come
tailor e d to the ne e ds of p e ople with dementia and sp e cialise d only in pr o viding help for
them. Perhaps the e xisting day centr e can b e come sp e cialise d in helping p e ople with
dementia. Ther e is also a ne e d for field w ork, for pr ofessionals to help p e ople with dementia
in their o wn home setting. Field teams w ould b e made up of pr ofessionals in me dical ( general
practitioner , neur ologist), health (nurse , o ccupational therapist and physiotherapist) and
so cial ( so cial w orker , so cial car e w orker ) car e .
Ther e is no old p e ople ’s home in the municipality and it is unlikely ther e will b e one
in the futur e , as the nearby sp e cial so cial car e institution successfully co v ers institutional
placements. The municipality will continue to fund the emplo yments in this institution,
pr o vide car e for the r esidents in ne e d and pr omote the w ork of NGOs, including in the field
of long-term car e for p e ople with dementia.

120 Mali
The sp e cial so cial car e institution has the p otential to de v elop long-term car e for p e ople
with dementia. Within the institution, ther e ar e plans to r e duce large war ds and de v elop
household communities, mo ving to war ds deinstitutionalisation. The y also want to b e come
a centr e to pr o vide car e for old p e ople in a ge ographically wider ar ea and could also include
p e ople with dementia fr om the municipality in Gr oup 2, esp e cially those still living in t heir
home envir onment. Such a vision can also b e a mo del for other municipalities that do not
y et hav e institutional car e available .
Exp erience fr om so cial home car e in all municipalities sho ws that the numb er of hours of
home car e for p e ople with dementia is insufficient, the appr oach is inade quate , as it do es not
pr o vide a sufficient le v el of p ersonalise d and individualise d supp ort, and the organisation
is inade quate , as it do es not pr o vide p ermanent staff to ensur e the r outines ne e de d in the
liv es of p e ople with dementia. The time of uncertainty for b oth p e ople with dementia
and their r elativ es, fr om the first signs of dementia to the final diagnosis and continuing
after diagnosis, which is p ointe d out by Fortinsky ( 2014 ), should b e av oide d. Mo or e and
Jones ( 2012 ) add that less than half of p e ople with dementia r e ceiv e a diagnosis, meaning
that ther e is a high risk of p e ople living with dementia without ade quate help and supp ort.
Pe ople with dementia r e ceiv e a diagnosis when the y e xp erience a crisis, when an unpleasant
e v ent happ ens, when their ability to do their job is r e duce d, which ar e early warning signs
of dementia. What is not r esolv e d ar e the pr oto cols for dealing with p e ople diagnose d
with dementia, which calls for integrate d solutions b etw e en the health and so cial supp ort
systems and the cr eation of a ne w “long-term car e ” for p e ople with dementia.
In all municipalities, ther e is a ne e d to str engthen kno wle dge of the health and so cial
se curity rights of p e ople with dementia and to de v elop ne w rights aime d at informal car ers,
for instance by adapting the emplo yment legislation to allo w fle xible emplo yment, mor e
leav e for caring for a family memb er with dementia, etc. Pe ople ne e d to b e made awar e of
their rights and the pr o ce dur es to e xer cise them. In addition, the r ole of so cial w orkers to
communicate their kno wle dge of the ne e ds of p e ople with dementia and informal car ers to
r ele vant lo cal and national p olicy makers ne e ds to b e str engthene d. For such a r ole , the y
hav e the appr opriate kno wle dge to act, as Gal and W eiss-Gal ( 2023 ) argue , base d on their
analysis of the p olitical engagement of so cial w orkers at the global le v el, that so cial w orkers
engage in p olitical de cision-making as citizens and as pr ofessionals with the purp ose and
goal of changing the organisations in which the y w ork, as w ell as lo cal and national p olicies.
Ne w forms of help must b e affor dable . Existing ones ar e to o e xp ensiv e for many p e ople
in the municipality , e v en if the y ar e time-limite d, such as home help for 20 hours a w e ek.
For some p e ople , home car e is to o e xp ensiv e and unaffor dable , and for this r eason the y ar e
often hospitalise d.
One of the ne w metho ds of help is long-term car e planning. This should take place
b efor e p e ople enter the long-term car e system. Pe ople should b e taught that it is a go o d idea
to e xpr ess their will in advance ab out ho w the y want to b e car e d for when the y ne e d long-
term car e (Bartlett, 2014 ; Bo yle , 2014 ; Manthorp e & Samsi, 2013 ). In the field of dementia,
this is of course asso ciate d with general kno wle dge ab out ageing and dementia, ther efor e ,
e ducational pr ogrammes should b e de v elop e d. These should also inv olv e informal car ers,
as the y ne e d to b e traine d to car e for family memb ers with dementia. The most imp ortant
r esults of the study ar e summarise d in T able 1 .
5. Conclusions
The analysis of the empirical material r e v eale d the follo wing characteristics of the long-term
car e maps in all sele cte d municipalities: (i) acute and unmet ne e ds of informal car ers, (ii) a

A map of long-term car e for p e ople with dementia at the le v el of lo cal communities 121
T able 1. Map of long-term car e (LT C) for p e ople with dementia
Municipality Status 65+ Se ctors 𝑛 N&R Vision
1 ( Gr oup 2) — 21.4 Public/pri-
vate/non-
go v ernmental
16 Ser vices not
adapte d to the
ne e ds
Vision of ne w
ser vices
2 ( Gr oup 3) urban
municipality
20.4 Public/pri-
vate/non-
go v ernmental
8 not many
organise d
forms of LT C
kno wle dge of
e xisting rights,
ne w metho ds
of help
3 ( Gr oup 5) urban
municipality
23.3 Public/pri-
vate/non-
go v ernmental
7 shortage of
vacancies in
formal forms
of LT C
kno wle dge of
e xisting rights,
ne w metho ds
of help
Notes : 65+ = Shar e of p e ople 65+ in 2021 [%], Se ctors = Se ctors of LT C ser vices, 𝑛 = No . of participants in the
fo cus gr oup , N&R = The ne e ds and r esp onse .
multi-tier e d long-term car e system, (iii) lack of community-base d forms of long-term car e
and (iv ) inade quate r esp onses to the ne e ds of p e ople with dementia. Ev en in municipalities
wher e ther e ar e differ ent forms of help available , b oth institutional and community-base d,
which e xist in all se ctors of the ser vices, long-term car e for p e ople with dementia is base d
on informal car e . The cultural orientation of car e , as w ell as the long-standing negle ct of the
de v elopment of long-term car e , will pr obably mean that it will no longer b e ignor e d, but that
informal car ers will hav e to b e supp orte d in a concr ete way . In this r esp e ct, w e can build
on Crawfor d and W alker ( 2008 ) idea of de v eloping a national strategy for kinship car ers,
with a particular fo cus on informal car ers of p e ople with dementia. The national strategy
w ould define the forms of help and supp ort, advice and information, crisis inter v entions,
car e er pr ogrammes in which car ers ar e r e cognise d and supp orte d to pr o vide car e . The
national strategy w ould also define the r ole of municipalities in the de v elopment of these
pr ogrammes, follo wing the e xample of the Resolution on the National So cial Pr ote ction
Pr ogramme , which e xplicitly defines the r ole of municipalities. Ther e is a ne e d to de v elop a
dyadic appr oach, one that r esp onds to the ne e ds of p e ople with dementia and their r elativ es
at the same time . Concr ete supp ort do es not hav e to b e for e v er y one inv olv e d in the car e
of p e ople with dementia at the same time . It may b e sufficient to help r elativ es to hav e a
successful impact on the quality of life of p e ople with dementia, or vice v ersa. Ther e is
r esear ch confirming that satisfaction of p e ople with dementia has a p ositiv e effe ct on the
w ell-b eing of r elativ es and vice v ersa (Charlesw orth, 2014 ). It is also p ossible to de v elop
supp ort pr ogrammes that addr ess all those inv olv e d in the supp ort pr o cesses, as some
r esear ch confirms that such inv olv ement enhances the o v erall health of r elativ es, the mental
health of p e ople with dementia and pr olongs the time of going to an old p e ople ’s home .
The multi-tier e d system of long-term car e do es not allo w for transpar ency of the system,
transpar ency of rights and transpar ency of ho w the y ar e implemente d. It hinders the
de v elopment of community-base d long-term car e and r einfor ces institutionalisation. It is
ne cessar y to go b e y ond familiar patterns of practice and to put the ne e ds of p e ople with
dementia at the centr e , thus enabling the de v elopment of ne w forms of car e that r esp ond
effe ctiv ely to kno wn ne e ds, as w ell as to the sp e cific ne e ds of certain gr oups of p e ople with
dementia ( e .g., under 65, p e ople with dementia without r elativ es and informal car e). At
the same time , the ne e ds of informal and formal car ers in an integrate d long-term car e

122 Mali
system will ne e d to b e r e cognise d. At the moment, the issue of staffing is v er y acute b e cause
ther e ar e no p e ople to pr o vide car e for p e ople with dementia. National measur es should b e
co or dinate d with the ne e ds at lo cal le v el.
Resear ch on long-term car e for p e ople with dementia, using the metho d of Rapid Ne e ds
and Ser vices A ssessment
3
in sele cte d municipalities, sho w e d that w e hav e gather e d r ele vant
data for the de v elopment of long-term car e for p e ople with dementia in a rapid way . It
demonstrate d the usefulness of the metho d and its suitability for pr o viding ne w solutions,
b oth at lo cal and national le v el.
A ckno wle dgment
This pap er was financially supp orte d by the Slo v enian Resear ch And Inno vation A gency
within the r esear ch pr ogram So cial W ork as the Bear er of the Pr o cesses of So cial Justice
and Inclusion in Slo v enia ( Grant No . P5-0058) and the r esear ch pr oje ct Long-term Car e of
Pe ople with Dementia in So cial W ork The or y and Practice ( Grant No . J5-2567).
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