A dvances in Metho dology and Statistics , 2023, 20 (2), 93–107. https://doi.org/10.51936/ztr c8377
Informal car ers of p e ople with dementia: Ho w to
r esp ond to their ne e d for supp ort and help on differ ent
le v els?
Liljana Rihter
a, ∗
, Miriam Hurtado Monarr es
a,b
a
Univ ersity of Ljubljana, Faculty of So cial W ork, Ljubljana, Slo v enia
b
Univ ersity of Ljubljana, Faculty of So cial Sciences, Ljubljana, Slo v enia
Abstract
So cial w ork is constantly e v olving and the or etically enriche d to me et p e ople ’s ne e ds in ne w
so cial situations. Informal car ers must balance car e with other demands while facing a range
of obstacles. Despite r esear ch on what informal car ers r e quir e , a sp e cific typ ology of their
ne e ds has y et to b e formulate d. The r esear ch question consider e d is “What ar e the ( gr oups
of) ne e ds of individuals who pr o vide informal car e for p e ople with dementia?” . A s part
of the r esear ch pr oje ct Long-term Car e for Pe ople with Dementia in So cial W ork The or y
and Practice , w e inter vie w e d a non-random conv enience sample of 20 r elativ es acting as
informal car ers of p e ople with dementia. The r esults ar e pr esente d as a typ ology of ne e ds on
the micr o le v el (p ersonal health—emotional health, physical health), mezzo le v el ( car e tasks—
supp ort fr om formal car e , planning—information, counselling) and macr o le v el ( legislation,
system changes). Most obstacles and ne e ds identifie d w er e on the micr o and mezzo le v els.
Mor e than on the system (macr o le v el), informal car ers se e the r esp onsibility and bur den of
car e as lying on the individual (micr o le v el) and institutions and the community (mezzo
le v el).
K e y w or ds: long-term car e , so cial w ork, informal car e , car egiving task, p ersonal health
1. Intr o duction
The de v elopment of so cial w ork the ories constantly follo ws the ne e ds of p e ople and ne w
so cial situations to establish appr opriate metho ds and te chniques along with ade quate help
and supp ort pr o cesses. In so cial w ork, applicable r esp onses ar e de v elop e d in r esp onse to
ne e ds on the micr o , mezzo and macr o le v els (Mese c, 2003 ). In 2013, 13 % of p e ople age d 60
y ears or older ar ound the w orld r e quir e d long-term car e (Prince et al., 2013 ). Car e may b e
pr o vide d by formal ser vices, informal car ers, or b oth. Due to the lack of formal car e (in the
community ) and insufficient r egulation of the system ( although the Long-term Car e A ct
∗
Corr esp onding author
Email addr esses: liljana.rihter@fsd.uni-lj.si (Liljana Rihter ), miriam.hurtado-monarr es@fdv .uni-lj.si
(Miriam Hurtado Monarr es)
ORCID iDs: (Liljana Rihter ), (Miriam Hurtado Monarr es)

94 Rihter and Hurtado Monarr es
was passe d, its implementation has b e en halte d and amendments ar e e xp e cte d) in Slo v enia
(Ministrstv o za zdravje , 2016 ), a considerable shar e of car e w ork is imp ose d on informal
car ers. This is esp e cially the case with informal car ers of p e ople with dementia b e cause
ther e ar e no formal ser vices available for them, notably in rural ar eas (Rihter , 2022 ). The
fo cus in this article is on the ne e ds of informal car ers of p e ople with dementia. The challenge
for all informal car ers is to balance the car e with other demands on their time like family ,
paid w ork, leisur e , etc. (Br o daty & Donkin, 2009 ), but also with their o wn emotional and
psy chological state . Family car ers of p e ople with dementia ar e often stigmatise d by the
disease ’s invisibility . Resear ch sho ws (Batsch & Mittelman, 2012 ) that a ke y r eason for this
stigma is the lack of e ducation ab out dementia in so ciety . Resear ch in the last 20 y ears
on the ne e ds of informal car ers of p e ople with dementia in Slo v enia in terms of help and
supp ort was largely base d on colle cting data thr ough inter vie ws with car ers, partly and less
often thr ough obser vation. In their r esear ch, authors F laker et al. ( 2008 ) and Mali et al. ( 2011 ,
2018 ) r elie d on differ ent typ ologies of ne e ds fo cuse d on the ne e ds of p e ople with dementia
and not ( or only rar ely ) on those of car ers. Regar ding what informal car ers ne e d, Queluz
et al. ( 2020 ) r e vie w e d o v er 30 studies in this ar ea and determine d that the most common
ne e ds of car ers of p e ople with dementia r elate to health (mostly emotional) and the ne e d
for supp ort fr om others. Ther e ar e a fe w general the ories of ne e ds fr om which the ne e ds
typ ologies ar e deriv e d (Bradshaw , 1972 ; Stuffleb eam et al., 1985 ). Mali and Gr eb enc ( 2021 )
state that so cial w ork is primarily concerne d with the characteristics of e v er y day situations
in which the conditions and cir cumstances of a p erson’s life also r e v eal their ne e ds and
obstacles. The follo wing part of the article pr esents e xisting typ ologies of ne e ds de v elop e d
during r esear ch on the ne e ds of older p e ople , p e ople with dementia, and their informal
car ers. These typ ologies pr o vide the frame w ork use d in the empirical part of the article .
Our r esear ch question is accor dingly “What ar e the ( gr oups of) ne e ds of those who
pr o vide informal car e for p e ople with dementia?” . The answ er is to b e use d to de v elop a
pr eliminar y typ ology of their ne e ds. This typ ology combines the ne e ds identifie d and le v els
on which those ne e ds ar e e xpr esse d (micr o , mezzo , macr o). Wher e r esp onses to ne e ds ar e
lacking, w e pr esent r efle ctions and make suggestions r egar ding the le v el and manner in
which this could b e r egulate d. In so doing, w e draw on analogies fr om other ar eas of so cial
w elfar e wher e similar solutions hav e alr eady b e en establishe d.
2. Ne e ds of informal car ers of p e ople with dementia: Fr om the general to the
sp e cific
While e xploring ne e ds, the first challenge arises fr om the fact that ne e ds ar e define d in
various ways. Belo w , w e list some p ossible definitions and e xplain the frame w ork use d in
the pr esente d r esear ch when e xploring the ne e ds of informal car ers of p e ople with dementia.
The Dictionar y of the Slo v ene Literar y Language (Fran, n.d. ) defines ne e d as: (i) what
e xists, arises b e cause of its absence ( with tw o subgr oups: [ a] what is ne cessar y for life or
w ork, and [ b] what is r e quir e d, wants to); (ii) which is cause d by cir cumstances, a state that
r e quir es an app earance , the r ealisation of something; or (iii) e xcr etion of urine , sto ol. In the
Anglo-Saxon w orld, W ebster’s definition of ne e ds is w ell kno wn (Merriam- W ebster , n.d. ),
and is similar to the one ab o v e . In this definition, ne e ds ar e ne cessar y duties, obligations;
lack of a certain thing that is desirable , useful; physiological or psy chological conditions
for the w ell-b eing of the organism; cir cumstances that r e quir e pr o vision or r eme dy; lack of
means for sur vival or p o v erty .
Stuffleb eam ( 1971 ) defines ne e ds fr om se v eral p ersp e ctiv es. The first r efers to the gap
b etw e en what is desir e d and what w e obser v e as a de viation fr om it. Her e , ne e ds ar e

Informal car ers of p e ople with dementia 95
determine d by a test base d on certain criteria and forms to v erify that the criteria hav e b e en
met. The se cond asp e ct is the “ demo cratic” vie w wher e ne e d is define d as a change desir e d
by the majority of a certain r efer ence gr oup . Such a vie w is demo cratic and inv olv es a
larger numb er of p e ople , although one disadvantage is that it mixes ne e ds with pr efer ences,
dep ends on the le v el of information p ossesse d by the r efer ence gr oup , and allo ws for false
targeting. The thir d asp e ct is the diagnostic one wher e it is assume d that the ne e ds that
ensur e sur vival must not b e o v erlo oke d. This vie w allo ws for the disco v er y of satisfie d and
unmet ne e ds, while using logic and available r esear ch data to determine which differ ences
w ould b e harmful. Still, it is flaw e d since it fo cuses only on basic sur vival ne e ds or omits the
harmful effe cts of deprivation and e xcludes higher-le v el ne e ds. The fourth is the analytical
asp e ct wher e ne e ds ar e define d as opp ortunities for impr o v ement that ar e pr e dicte d base d
on giv en information ab out the curr ent state . A disadvantage of this appr oach is that it is
abstract b e cause ne e ds ar e difficult to op erationalise in this way and r e quir e highly skille d
p ersonnel.
Bradshaw ( 1972 ) and Leskošek and Hrženjak ( 2002 ) establishes a typ ology of ne e ds that
helps to conceptualise the r elationship b etw e en individual and so cial actions in terms of
ne e ds. Normativ e ne e ds ar e identifie d when criteria/standar ds ar e set in this way and a
comparison is made b etw e en the standar ds/criteria and what e xists. If an individual or a
gr oup do es not r each the standar d, w e sp eak of the e xistence of a ne e d. Exp erts establish
normativ e ne e ds fr om the top do wn; the y should b e obje ctiv e , scientific and the or etical.
The y do not ne cessarily r efle ct differ ent p e ople ’s actual ne e ds. Felt ne e ds ar e base d on
kno wing p e ople , kno wing ho w the y fe el ab out ne e ds, and e quating them with wants. The y
ar e determine d fr om the b ottom up , y et ar e not always e xpr esse d. Expr esse d ne e ds ar e
fe elings follo w e d by action. W e r efer to them as a demand of p e ople who e xpr ess the
ne e d for a ser vice/help/supp ort. Comparativ e ne e ds ar e identifie d when p e ople or gr oups
r e ceiving a ser vice ar e use d as a r efer ence p oint for similar p e ople or gr oups not r e ceiving
such ser vices. Although Leskošek and Hrženjak ( 2002) b elie v e that Bradshaw’s typ ology is
appr opriate for so cial ser vices, w e must consider Bradshaw’s caution, “[…] a true ne e d is
one in which all four p ersp e ctiv es match” .
In so cial w ork and mor e br oadly in so cial car e , the assessment of ne e ds is e v en mor e
imp ortant. Leskošek and Hrženjak ( 2002 ) state that so cial ser vices should b e organise d
on the basis of individuals’ ne e ds. Ho w e v er , e v en though ne e ds assessment is alr eady
ackno wle dge d as an imp ortant asp e ct of pr ogramme or ser vice design, the question arises of
whether e v er ything that w e lab el as a ne e ds assessment pr o vides a sound basis for designing
p olicies or pr ogrammes.
Mali and Gr eb enc ( 2021 ) describ e ho w r esear ch on ne e ds in so cial w ork fo cuses on the
conte xt of daily life . Such r esear ch is particularly imp ortant when it considers the setting of
practical so cial w ork since it r e v eals what p e ople ne e d for b oth sur vival and meaning in life ,
what the y want to change and impr o v e . Information r egar ding actual ne e ds in e v er y day life
can also b e an imp ortant starting p oint for so cial w ork science and practice to understand
p e ople ’s situations and plan appr opriate inter v entions on differ ent le v els.
Resear chers of p e ople ’s concr ete ne e ds hav e often categorise d them. In the past de cades,
fo cus was giv en to the ne e ds of p e ople of dementia due to the r e quir ement to de v elop
appr opriate pr ogrammes and ser vices. Certain typ ologies w er e de v elop e d ( e .g., typ ology of
ne e ds of old p e ople [Ramo vš, 2003 ], typ ology of long-term car e ne e ds [F laker et al., 2008 ],
typ ology of ne e ds of p e ople with dementia [Kitw o o d, 2005 ]).
F laker et al. ( 2008 ) generally classify ne e ds in tw o dimensions: e xpr esse d-une xpr esse d
and satisfie d–unsatisfie d. Cr oss-se ctions of these dimensions yield mor e sp e cific combi-

96 Rihter and Hurtado Monarr es
nations: (i) e xpr esse d and satisfie d ne e ds; (ii) e xpr esse d and unsatisfie d ( calle d “urgent”);
(iii) une xpr esse d and satisfie d ( w e lab el them as self-e vident); and (iv ) une xpr esse d and
unsatisfie d. Fr om the p ersp e ctiv e of ne e ds r esear ch (if w e w er e to e xplicitly ask p e ople
what the y ne e d and what the y lack), use of the ab o v e dimensions w ould mer ely r e v eal
the e xpr esse d ne e ds, esp e cially the unsatisfie d ones, wher eas the une xpr esse d ones w ould
r emain hidden.
The ne e ds of informal car ers of p e ople with dementia hav e b e en studie d by se v eral
authors. Queluz et al. ( 2020 ) summarise d them after analysing 31 studies fr om ar ound
the w orld on this topic. The ne e ds w er e classifie d in the follo wing gr oups: (i) Car egiving
tasks: P hysical/nursing car e; Household w ork; Sup er vision/supp ort; Co or dination; Help
r e ceiv e d fr om others (informal and formal); (ii) Relationship with formal ser vice pr o viders;
(iii) Housing; (iv ) Juggling r esp onsibilities; ( v ) Financial costs; ( vi) Personal health: P hysical
health; Emotional health; ( vii) Relationships: With the car e r e cipient; With the family;
( viii) P lanning: Crisis planning; Futur e planning; Information ab out dementia and dementia
car e; Information ab out pr ofessional supp ort and formal ser vices; Information ab out legal
r egulation and caring. When using the term “juggling r esp onsibilities” , w e r efer to the
w ork-life balance of the car ers, and ho w the y manage to balance their w ork and car e
r esp onsibilities. A ccor ding to Pitsenb erger ( 2006 ), the car e r esp onsibilities’ interfer ence
with car ers’ w ork often causes them emotional, financial and physical str ess.
Queluz et al. ( 2020 ) also analyse d the solutions pr op ose d for me eting the ne e ds by
categorising them in tw o gr oups, namely e ducation and information; and ser vices. Education
and information include d the follo wing: e ducational activities ab out dementia car e in each
stage of dementia (practical advice); information ab out managing b ehavioural pr oblems
and changes in p e ople with dementia; information ab out dementia and dementia car e;
information ab out formal supp ort; information in a central lo cation. With r esp e ct to
ser vices, the y indicate d that informal car ers should r e ceiv e formal supp ort p ertaining to the
health of the p erson with dementia ( e .g., home car e , ser vices close to home), that ser vices
should b e pr o vide d to impr o v e car ers’ mental health ( emotional supp ort), that day centr es
for p e ople with dementia should b e establishe d to giv e car ers time for themselv es, and that
supp ort for car ers’ w ell-b eing should var y by the typ e of dementia inv olv e d.
In Slo v enia, the ne e ds of p e ople with dementia should b e addr esse d by b oth so cial car e
and health car e , esp e cially long-term car e . The lack of formal car e in the community (most
formal car e is pr o vide d in institutional car e settings) (Ministrstv o za zdravje , 2016 ) and
insufficient r egulation of the system (p ostp onement of the Long- T erm Car e A ct in Slo v enia)
means that ar e alr eady many unmet ne e ds of p e ople with dementia. Notwithstanding various
forms of ser vices b eing available to the elderly , the y ar e not ne cessarily adapte d to the ne e ds
of p e ople with dementia, e v en less to the ne e ds of their informal car ers. Filip o vič Hrast et al.
( 2014 ) list e xisting forms of community-base d car e able to partly me et informal car ers’ ne e ds:
home so cial car e , home health car e , day car e centr es, r espite car e , clubs for older p e ople ,
health and nutrition pr ogrammes, supp ort ser vices for family car ers, te chnical assistance
ser vices, adapte d or assiste d housing, activ e aging pr e v ention pr ogrammes, mobile and
other communication ser vices, etc. Still, ther e is the question of the e xtent to which these
ser vices ar e adapte d to informal car ers of p e ople with dementia.
The fact that the ne e ds of informal car ers of p e ople with dementia may o ccur on differ ent
le v els also makes it ne cessar y to think ab out r esp onses on multiple le v els. Nago de et al.
( 2019 ) note that home so cial car e users and their car ers together constitute the micr o
le v el of home so cial car e . Y et, this w orks in conjunction with the mezzo ( ho w the car e is
organise d within the community ) and macr o le v els ( ho w the so cial p olicy and legislation

Informal car ers of p e ople with dementia 97
supp orts/hinders car e). All thr e e le v els interact with each other , while the latter tw o hav e
indir e ct or dir e ct effe cts on the micr o le v el due to de cisions and actions and vice v ersa,
and the micr o le v el giv es them fe e dback and ser v es as a guide by way of e xp eriences and
changing ne e ds. Ther efor e , in this article w e also consider the ne e ds and e xisting r esp onses
and r eactions of informal car ers fr om the p ersp e ctiv e of the differ ent le v els: the micr o
( dir e ct car e of a p erson with dementia), the mezzo ( community forms of help), and the macr o
( systemic assistance arrangements).
3. A pr eliminar y typ ology of ne e ds of informal car ers of p e ople with dementia
3.1. Resear ch pr oblem and metho dology
The differ ent frame w orks and starting p oints for thinking ab out ne e ds in general (Bradshaw ,
1972 ; Chamb ers et al., 1992 ; Isaac & Michael, 1995 ) and sp e cifically as concerns particular
gr oups of p e ople (F laker et al., 2008 ; Queluz et al., 2020 ; Ramo vš, 2003 ) cr eate challenges
in ne e ds r esear ch. Chamb ers et al. ( 1992 ) list the le v els on which r esear ch can b e p er-
forme d: (i) the ne e ds of individuals or gr oups as p otential users of so cial pr ogrammes;
(ii) organisational-le v el ne e ds, which concentrate on organisational functioning (te chnical
assistance , de v elopment, training); (iii) studies of community ne e ds, which typically encom-
pass a br oader conte xt—neighb ourho o d de v elopment, co or dination of ser vices, funding;
(iv ) studies of so cietal-le v el ne e ds consider an e v en br oader conte xt—identification of so cial
pr oblems, demographic indicators, so cial p olicy analysis. Nonetheless, this do es not answ er ,
for e xample , the question of ho w to obtain data on ne e ds that ar e not op enly e xpr esse d.
Despite r esear ch on what informal car ers of p e ople with dementia ne e d, a sp e cific
typ ology of their ne e ds has y et to b e formulate d. While some classifications of these ne e ds
ar e available ( e .g., Queluz et al., 2020 ), the y do not pr o vide additional information ab out ho w
to r esp ond to the ne e ds emerging on differ ent le v els. Ther efor e , as part of the basic 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 w e
conducte d qualitativ e r esear ch on a conv enience sample sele cte d fr om the p opulation of
car ers who ar e close r elativ es of the p e ople with dementia for whom the y car e . Our r esear ch
question was “What ar e the ( gr oups of) ne e ds of those who pr o vide informal car e to p e ople
with dementia?” . W e inter vie w e d 20 informal car ers on various topics. Since the purp ose of
the pr oje ct e xtende d b e y ond e xploring the ne e ds of informal car ers, the semi-structur e d
inter vie w guide include d the follo wing topics: signs of dementia and diagnosis, r e cognition
of dementia by a r elativ e , kno wle dge of the disease , communication with a r elativ e with
dementia, changes in the life of a p erson with dementia and their family , e xp eriences with
institutional car e . W e also e xplor e d the issue of supp ort and help fr om the imme diate and
wider so cial envir onment, as w ell as formal help and asso ciate d ne e ds and obstacles.
In this article , w e pr esent analysis of the inter vie ws se eking to identify informal car ers’
supp ort ne e ds and obstacles while caring for a p erson with dementia. W e p erforme d
a thematic analysis by gr oups of ne e ds and obstacles and then op en co ding ( by fr e ely
attributing co des) of sp e cific categories within the gr oups of ne e ds (Mese c, 2023 ). In the
analysis, w e assume d that, alongside op enly e xpr esse d ne e ds, w e should also pay attention to
p ossible fe elings that had y et to b e transforme d into e xpr esse d ne e ds ( as define d by Bradshaw ,
1972 ). The inter vie w e es mentione d their ne e ds mainly while answ ering questions that
e xplicitly r eferr e d to this topic (Did y ou r e ceiv e enough supp ort fr om the envir onment?
Ho w much and what kind of help? What w ould y ou ne e d to make car egiving easier , but
y ou hav e not r e ceiv e d? What kind of help and supp ort w ould y ou ne e d to e xer cise certain
rights? In which instances? P lease describ e . What kind of help and supp ort w ould y ou ne e d
while w orking with pr ofessionals?). The statements made ab out the obstacles (mentione d

98 Rihter and Hurtado Monarr es
in differ ent parts of the inter vie w ) allo w e d us to infer p ossible fe elings with r esp e ct to ne e ds
that w er e not y et e xpr esse d. In this case , b e cause w e ar e only inter este d in inferring that
the e xpr esse d obstacle might b e a ne e d, w e liste d the obstacles only when b oth authors
r esp onsible for the analysis and this pap er agr e e d. Obstacles p er ceiv e d as p ossible felt ne e ds
by only one author w er e e xclude d fr om further analysis. Stuffleb eam ( 1971 ) also describ es
such a vie w of ne e ds as an analytical asp e ct. He vie ws ne e ds as a dir e ction of impr o v ement
pr e dicte d base d on giv en information ab out the curr ent state . Fr om the r esear ch asp e ct, a
disadvantage of this understanding of ne e ds lies in its abstractness as a ne e d is difficult to
op erationalise . A ccor dingly , while analysing the r esp onses of informal car ers of p e ople with
dementia, w e also define d the dir e ction of impr o v ement as a ne e d ( when the starting p oint
was a pr onounce d obstacle), e v en though the ne e d was not ne cessarily e xplicitly state d in
their r esp onses. W e also paid attention to the le v el on which ne e ds and obstacles o ccur:
micr o , mezzo or macr o .
3.2. Results
Base d on the ab o v e-mentione d classification of ne e ds pr op ose d by Queluz et al. ( 2020 ), w e
identifie d obstacles and ne e ds as e xpr esse d by informal car ers of p e ople with dementia in
Slo v enia and sho wn graphically in Figur e 1 . The figur e pr esents a typ ology of ne e ds of
informal car ers of p e ople with dementia. Among the eight gr oups, six w er e identifie d in
our study . T w o (r elationships with formal ser vice pr o viders and r elationships with car e
r e cipients and family memb ers) w er e not e xplicitly addr esse d, with p ossible r easons for this
b eing discusse d in the last part of the article .
In the gr oup of Personal health, one categor y ( also found in Queluz et al., 2020 classifi-
cation) was addr esse d as b oth an obstacle and a ne e d. Namely , under physical health car ers
mentione d obstacles to their o wn health pr oblems, the bur den of car e and e xhaustion, and
e xpr esse d the ne e d for a r e duce d physical bur den.
The categor y of emotional health was addr esse d by the obstacles app earing in differ ent
ar eas of life: due to r easons r elate d to the p e ople with dementia, due to the w orkload of
car e , p ersonal r esp onse , and due to other factors (r elativ es’ and institutional car e , so cial
factors, and others).
Include d among the r easons conne cte d to p e ople with dementia w er e the deterioration of
the health of the p e ople with dementia, despair o v er the disease ’s pr ogr ession, and conflicts
with the car e r e ceiv er: “ At the b eginning, w e also argue d a lot b e cause she couldn’t b e
convince d of anything. It was v er y difficult for me then b e cause she often curse d and calle d
me by her sister’s name ” (S_06_ CE
1
); the violence of the car e r e ceiv er , the r efusal of help
fr om the car e r e ceiv er , and the despair of b eing place d in a home: “ At that time , it was r eally
a r elief for me . But no w I always hav e a guilty conscience . A guilty conscience is always
pr esent. It o ccurs to me that mayb e she could liv e at home […] Y es, but the house w ould
hav e to b e completely r emo delle d” (S_01_ CE).
The inter vie w e es state that the str ess fr om the car e and lack of confidence as a car er
ar e obstacles arising fr om the car e w orkload: “With my grandmother , who was 90 y ears
old, the diagnosis was much easier to accept than with my mother , who was 70. She was
still physically fit, she could go to Šmarna gora,
2
but she was so inse cur e in her b o dy that it
1
The citation lab el consists of a letter indicating that it is an informal car er; se quential numb ers of the
inter vie w e e and tw o letters indicating the r egion wher e the inter vie w was conducte d.
2
Hill near the capital city .

Informal car ers of p e ople with dementia 99
Figur e 1. Obstacles and ne e ds of informal car ers of p e ople with dementia and le v els identifie d

100 Rihter and Hurtado Monarr es
br eaks y our heart. It’s not nice […] That’s why I also w ent to Sp ominčica
3
to listen. Ther e
the y gav e me a whole backpack full of information, which is v er y useful for me . But y ou
still don’t kno w ho w to do things pr op erly . It’s like y oga: y ou can practise y our whole life ,
but some e xer cises y ou’ll ne v er get right. Be cause y ou start wr ong. It’s har d. It’s har d on
the p e ople closest to y ou”” (S_02_ CE).
Obstacles categorise d as a p ersonal r esp onse include psy chological distr ess, guilty
conscience , w orries ab out the futur e , and difficulty with accepting the disease .
Among the obstacles cause d by other factors, ther e w er e a fe w that concerne d their
r elativ es: disagr e ement ab out car e with r elativ es: “Mayb e my sister someho w did not want
[…] my sister is also str ongly against me dicine , I am not so much. If y ou hav e to , y ou hav e
to , no? If y ou kno w it’s bad, or if y ou can hav e conse quences fr om it if y ou hesitate to o long.
I said y ou hav e to get me dicine as so on as p ossible to slo w it do wn. Both my mother and
she w er e v er y much against it. So , y eah” (S_05_ CE), less time for the car er’s o wn family ,
and changing r oles in the family .
Some obstacles w er e r elate d to institutionalisation: fear of institutionalisation, difficulty
with finding a nursing home , and condemnation after the institutionalisation: “Others judge
y ou and say ‘why did y ou put him in the home?” (S_03_ZA ).
Another gr oup of factors is concerne d with so cial factors: bans on visits during the
pandemic, isolation due to the pandemic, and the fact that the informal car er’s r ole is not
r e cognise d: “I hav e not obser v e d much, it se ems to me that some p e ople always se e it as a
tab o o subje ct, but in fact w e car ers ar e not visible so much in this r ole b e cause my mother
and I w er e mostly at home or close by . Of course , the family accepte d the changes in my
mother , w e w er e all a bit sho cke d, but I do not think the wider community e v en notice d our
plight, our w ork” (S_09_ZA ).
The ne e ds the car ers identifie d in r esp onse to these obstacles liste d in the emotional
health categor y w er e: pr ofessional help and supp ort, the information the y r e quir e d, help
with r elationships, time management, and r e cognition of the car er’s r ole .
Under pr ofessional help and supp ort, the y mentione d the ne e d to talk to some one ,
psy chiatric help , help with coping with distr ess: “When w e got the notice that w e could go
to the nursing home , and when I told my mother , ther e was a lot of drama. Ev en though
she ’ d made the application 10 y ears b efor e . But when the moment came , ther e was drama,
my br other and I w er e scar e d” (S_01_ CE). The information the y ne e de d include d help in
dealing with the diagnosis and the ne e d for supp ort in the early stages of dementia: “ After
the diagnosis, at least at the b eginning, the biggest changes w er e with the other family
memb ers, who w er e all coping in their o wn way” (S_13). Under help with r elationships,
the y mentione d helping to build a r elationship with family memb ers and helping to say
go o dby e to the p erson in ne e d of car e in an appr opriate way . In terms of time management,
the y e xpr esse d the ne e d to hav e time for themselv es and the ne e d for their r ole as (informal)
car er to b e ackno wle dge d.
In the se cond gr oup calle d Car egiving tasks, only one subgr oup was addr esse d— Help
r e ceiv e d fr om others (formal and informal car e) . Most categories in this subgr oup w er e
vie w e d as b oth ne e ds and obstacles. The follo wing categories w er e identifie d: general
assessment, informal car e , formal car e , and health car e system. One categor y (p e ople with
dementia) was mentione d as a ne e d.
In the general assessment of car egiving tasks, the car ers r eferr e d to the (non)availability
of help and lack of community supp ort b e cause p e ople with dementia cannot liv e alone at
3
Slo v enian Dementia Supp ort A sso ciation.

Informal car ers of p e ople with dementia 101
home . Some car ers ar e unfamiliar with the car e system: “ At the time , it was all ne w to me
and I didn’t kno w wher e to turn. I aske d my do ctor what and ho w . And e v en ther e , the y
tell y ou ab out symptoms and me dications, but that’s not all” (S_03_ZA ).
When it comes to formal car e , the obstacles r elate to the high cost of formal car e , the
r eje ction of formal car e , the hesitation in commencing formal car e , and the inappr opriate
b ehaviour of so cial w orkers: “ A s I said, the hospital staff didn’t happ en to make me angr y
b e cause she calle d me to take him home . Ev en when I was arranging things on the phone ,
e v er y one was friendly , e xcept for the one fr om the hospital” (S_03_ZA ), the absence of
non-p ermanent institutionalisation, no companionship for a p erson with dementia, and
no long-term car e . Other obstacles mentione d w er e that the formal car ers (in home car e)
change and that nursing home staff b ehav e inappr opriately . In the informal car e categor y ,
the obstacles w er e mor e obvious when the car er was the sole car er and the y w er e unable to
pr o vide mor e car e .
In the health car e system categor y , the inter vie w e es describ e d pr oblems with the health
car e system, dissatisfaction with me dical car e , slo w diagnosis, the fact that do ctors do not
hav e time , and that health car e w orkers do not help . This le d them to e xpr ess the ne e d to
kno w the health car e system: “ A lot dep ends on ho w much y ou inquir e . Ho w qualifie d he is
and ho w much he can r esear ch. I don’t think it’s a barrier . For me , it hasn’t b e en a pr oblem.
If a p erson do esn’t get the hang of it, it can b e a v er y big obstacle ” (S_01_ CE).
The ne e ds the y identifie d in r esp onse to the obstacles liste d under Help r e ceiv e d fr om
others (formal and informal car e) r egar ding the general assessment, ar e the ne e d for affor d-
able car e and go o d patient car e: “I’v e only one complaint, but it has nothing to do with the
home . She waite d 9 hours in the emergency r o om to b e transp orte d home . That’s a systemic
pr oblem. My br other and I w er e upset at the time and the y invite d us to talk, the y to ok it
seriously and w e agr e e d” (S_01_ CE), help in the case of a violent car e r e ceiv er , ke eping a
car e r e ceiv er busy , and arranging fr e e long-term car e . For formal car e , the y mentione d the
follo wing ne e ds: shorter waiting times, the same formal car er , the ne e d for mor e car e , formal
car e during the night, and the pr ofessiona l and emphatic app earance of formal car e: “I’ d
like to se e gr eater pr ofessionalism, human r esp e ct, compassion ab o v e all” (S_02_ CE), mor e
kindness fr om so cial w orkers, and non-p ermanent institutionalisation. The y also aske d for
enough space in the nursing home and long-term car e . In terms of informal car e , the y also
r eferr e d to the ne e d for help fr om family memb ers and friends. Within the categor y r elate d
to p e ople with dementia, the y e xpr esse d the ne e d to convince a r elativ e ( with dementia) to
accept help . Regar ding the health car e system, the y mentione d the ne e d for a primar y car e
physician and me dical help in the facility , as w ell as the fact that physicians should take
mor e time p er visit.
Under the P lanning gr oup , only one subgr oup was addr esse d—information ab out demen-
tia and taking car e of a p erson with dementia. Obstacles w er e divide d into tw o categories:
p ersonal and health systems.
Under p ersonal obstacles, car ers indicate d that their kno wle dge ab out dementia was
inade quate and the y w er e thus p o orly informe d. The y themselv es w er e dep endent on
learning ab out it after the diagnosis, and sometimes the car ers did not kno w ho w to r esp ond:
“When my father was hospitalise d for a str oke , I aske d the so cial w orker ther e if she could
help him find a r o om in the nursing home b e cause w e could not hav e him at home . A fe w
days later she calle d me and said that ther e was no r o om for him and that he w ould b e taken
home by ambulance . Unfortunately , y ou hav e to b e able to help y ourself enough, but some
p e ople can help themselv es e v en less than I was able to ” (S_03_ZA ). The y ar e not familiar
with issues inv olv e d in establishing the diagnosis.

102 Rihter and Hurtado Monarr es
In the conte xt of the health car e system, the follo wing obstacles w er e identifie d: the
physician’s attitude and the physician’s lack of kno wle dge ab out dementia: “It’s going to
sound mean, but I think the health car e system is just not pr epar e d for these dimensions of
dementia. The y do not kno w ho w to help y ou, and the y do not kno w ho w to giv e advice .
The y cannot tell y ou what to do to alle viate the symptoms of dementia. Ther e ar e se v eral
sp e cialists who ar e available imme diately and on a self-pay basis, and I hav e had go o d
e xp eriences with them” (S_02_ CE).
The general ne e ds the car ers e xpr esse d ar e the ne e d to plan car e and the ne e d for e xp ert
supp ort: “ A lot is said and written ab out dementia to day , but w e ar e not awar e of it. Ther e
is also to o little ‘supp ort’ , pr ofessional help ” (S_02_ CE), information ab out formal help ,
information ab out the rights of p e ople with dementia, help with finding institutional car e ,
and the ne e d to hav e all information in a single place . Regar ding their p ersonal ne e ds, the y
note d the ne e d for e ducation ab out dementia and ongoing car er training. A s community
ne e ds, the y liste d the ne e d to e ducate the community ab out dementia and to consult with
the car er . Ne e ds liste d in the ar ea of the health car e system r elate d to e ducating primar y car e
physicians ab out dementia and the ne e d for mor e information fr om health car e pr ofessionals.
In the ar ea of institutional car e , the y r eferr e d to the ne e d for information ab out placing a
r elativ e in a nursing home and information ab out institutional car e: “Lo oking back, I might
hav e ne e de d some one to e ducate me ab out all the options for institutional car e ” (S_07_ CE).
Under the Juggling r esp onsibility gr oup , the follo wing obstacles w er e mentione d: w ork
demands, adapting paid w ork to car e , and the str ess of so doing: “My sister and I alternate
visiting days. I hav e to say that this is quite a challenge since w e b oth w ork full-time and
hav e thr e e childr en” (S_07_ CE). In r esp onse , the y note d the ne e d to adjust their w ork to
the car e , to se cur e an e xit fr om w ork, and to adjust their family life: “The diagnosis came
v er y late , ther e w er e pr oblems b efor e . It cause d me a lot of tr ouble . I had a v er y r esp onsible
job , and sometimes I had to dr op e v er ything and rush to her . I also mo v e d in with her”
(S_01_ CE), e xtra help with car e , sharing car e b etw e en family memb ers, cheap er nursing
homes, and r e cognition of the r ole of car ers.
With r esp e ct to t he Financial costs gr oup , the y mentione d the obstacle of the financial
bur den ( e xp ensiv e nursing homes) and the ne e d to r e duce the financial bur den on the family .
In the gr oup of Housing and ar chite ctural adaptations, the informal car ers state d the
follo wing obstacles: barriers and stairs in an apartment. The ne e ds the y mentione d w er e
adapting the living space , mo ving to the gr ound flo or , and mo ving the car e r e ceiv er to the
car er’s home .
Base d on the identifie d obstacles and ne e ds sho wn in Figur e 1 , w e consider e d the le v els
(micr o , mezzo , macr o) on which the obstacles and ne e ds o ccur and can b e r esolv e d or
addr esse d. Under the Personal health gr oup , w e categorise d all of the mentione d obstacles
mainly on the micr o le v el. Only the obstacles liste d under the emotional health gr oup , which
ar e r elate d to other factors ( distr ess in finding a nursing home and community condemnation
due to the placement in a nursing home), w er e also categorise d on the mezzo and macr o
le v els. The ne e ds identifie d in this gr oup w er e also categorise d on the micr o le v el, e xcept for
pr ofessional help and supp ort ( wher e car ers addr esse d the ne e d for additional psy chiatric
help in the community ) and the r e cognition of the r ole of car ers (in the community and
so ciety ), which w er e place d on the micr o and mezzo le v els. In the gr oup of Car egiving tasks,
the obstacles w er e liste d on all thr e e le v els, with the micr o and mezzo le v els standing out.
The obstacles and ne e ds in the categor y of P lanning w er e also place d on all thr e e le v els,
but mainly the mezzo one . Both the obstacles and ne e ds in the Juggling r esp onsibilities
gr oup w er e liste d on all thr e e le v els, mostly on the micr o and mezzo le v els. The Financial

Informal car ers of p e ople with dementia 103
costs gr oup was place d on all thr e e le v els, with none standing out. The gr oup of Housing
and ar chite ctural adaptations was place d on all thr e e le v els, with the micr o le v el b eing
pr ominent.
4. Discussion and conclusions
Informal car ers play a large and imp ortant r ole in car e ( esp e cially for p e ople with dementia).
Mali et al. ( 2011 ) note that e v er y one faces illness in their liv es or among those close to them.
Alongside their e xisting daily str esses, the y r e quir e supp ort at least o ccasionally to cop e
with such an e xp erience . Since informal car ers ar e a v er y imp ortant factor in the day-to-day
liv es of p e ople with dementia ( by playing the r ole of adv o cates, having an imp ortant r ole and
tasks in ensuring the quality of life of the p erson with dementia), the y must b e supp orte d
and help e d while it is still p ossible (until the w eight and bur den of the additional loads cause
so much disturbance that the y ne e d constant help). F laker et al. ( 2008 ) argue that caring for
an elderly family memb er imp oses time , physical and emotional bur dens on family memb ers.
At the same time , car ers hav e doubts ab out the appr opriateness of placement in institutional
car e and ab out their abilities. Ther efor e , on top of r esear ching the ne e ds of p e ople with
dementia ( which is alr eady widespr ead and gr o wing), it is ne cessar y to r esear ch what their
informal car ers ne e d and to r esp ond accor dingly .
Both the comple xity of the ne e ds definitions and metho dological issues in e xploring the
ne e ds of car ers of p e ople with dementia hav e a considerable impact on the r esults pr esente d
ab o v e . The analysis r e v eale d that 25 % of the inter vie w e es did not answ er questions that
e xpr essly concerne d ne e ds. Ev en when w e counte d the numb er of statements, it turne d out
that out of 233 statements in which ne e ds or obstacles w er e identifie d, only 28 ( ab out 12 % )
op enly e xpr esse d ne e ds. This lo w p er centage of op enly e xpr esse d ne e ds may b e interpr ete d
by the fact that the inter vie w e d informal car ers had alr eady discusse d obstacles (felt ne e ds
that the y did not e xpr ess) in the other questions, or did not p er ceiv e them as such, or felt
the y cannot change anything and hav e surr ender e d to fate ( as also note d by F laker et al.,
2008 , who describ e unsatisfie d and une xpr esse d ne e ds as hidden ne e ds). Another r eason
could b e that the y ar e so emotionally inv olv e d in caring for the p erson with dementia
that the y do not e v en think ab out their o wn ne e ds. Still another r eason could b e that
the inter vie w was partly standar dise d and the inter vie w er did not giv e as much w eight
to questions that e xplicitly r eferr e d to ne e ds b e cause the inter vie w e e had talke d ab out
obstacles in other se ctions which the inter vie w er could understand as ne e ds. A ccor dingly ,
it must b e note d that the ne e ds w e identifie d base d on the obstacles might b e a mixtur e
of felt ne e ds and unmet and une xpr esse d ne e ds. The question is ho w ( with what metho d,
with what formulation of questions/indicators) can w e obtain b etter quality data on ne e ds.
Possible suggestions w ould b e to ask informal car ers mor e sp e cifically ab out ne e ds, using
the matrix pr op ose d by Mali et al. ( 2011 ), or to think ab out ho w to help p e ople articulate
their distr ess and ne e ds—fo cus gr oups wher e each participant can listen to each other .
Existing typ ologies of the ne e ds and classifications of ne e ds of informal car ers of p e ople
with dementia ( as liste d in the Se ction 2 ) ar e quite br oad and can pr o vide a general frame w ork
for thinking ab out systems-le v el inter v entions. In so cial w ork, wher e the fo cus is on p e ople ’s
daily liv es, w e hav e to b e v er y concr ete on the practical le v el. Ther efor e , our typ ology
(Figur e 1 ) includes se v eral tangible dir e ctions that not only consider the le v els on which the
obstacles and ne e ds ar e e xpr esse d but can also ser v e as a guide for so cial w orkers while
se eking to de v elop sp e cific inter v entions. The fact the typ ology is built on incomplete data
means that it must certainly b e supplemente d by additional r esear ch.
Ne v ertheless, the ne e ds of informal car ers of p e ople with dementia identifie d in the

104 Rihter and Hurtado Monarr es
study and as state d by Queluz et al. ( 2020 ) ar e largely consistent with the ne e ds and obstacles
identifie d by the inter vie w e es in our r esear ch. Of the eight gr oups describ e d, only tw o gr oups
and some subgr oups w er e not sp e cifically mentione d. Ho w e v er , the y ar e not entir ely absent
as one gr oup (Relationships with car e r e cipients and family ) partly o v erlaps with the categor y
of other factors by r elativ es (in the gr oup of Personal health) and another (Relationships with
formal ser vice pr o viders) o v erlaps in part with the health system categor y in the Car egiving
task gr oup . The contribution made by our typ ology lies in adding categories that ar e mor e
r efine d and to r efle ct the le v els on which obstacles and ne e ds emerge .
A ccor ding to Queluz et al. ( 2020 ) r esear ch on car ers’ ne e ds, the follo wing ne e ds o ccur
most fr e quently: the ne e d for emotional health ( help in o v er coming emotional distr ess; the
ne e d to r e cognise the status of a car er; the ne e d for emotional supp ort fr om family and
friends); the ne e d for formal and informal help; the ne e d for information ab out dementia and
caring for a p erson with dementia ( e .g., the ne e d for information ab out accessible ser vices
nearby ); the ne e d for physical health (ne e d for time for self; ne e ds r elate d to o wn health;
o v er coming physical barriers to car e). The ne e ds identifie d in the articles r eferr e d to by
Queluz et al. (2020 ) ar e mostly consistent with the ne e ds r ep orte d by the inter vie w e es in
the pr esent study .
The most pr ominent obstacles for individuals taking car e of p e ople with dementia ar e
those w e classifie d in the ar ea of emotional health and lack of supp ort. A major bur den
on car ers is the difficulty of their r elativ e accepting the diagnosis and witnessing the
deterioration of the car e r e cipient’s health, which is asso ciate d with conflict, emotional
distr ess, juggling car e and paid w ork, and car e and family life . In this ar ea, car ers miss
supp ort and esp e cially a ke y p erson to accompany and guide them after the diagnosis. It was
also suggeste d that this should b e establishe d up in a single place , i.e ., some one to inform
them ab out the disease and their rights, r efer them to the appr opriate facilities, pr o vide
psy chological supp ort, and giv e help with the bur eaucratic pr o ce dur es.
The car ers p ointe d out that much dep ends on the individual and ho w activ ely the y
engage in the sear ch for information ( wher e r esp onsibility is shifte d to the individual). The
lack of initial information cause d many to struggle with a lack of confidence as a car er .
The y also face d disagr e ements with their r elativ es ab out the car e and b eing judge d by
others who lacke d information ab out dementia, as w ell as not having their ne e ds as car ers
ackno wle dge d. The y e xpr esse d a ne e d for pr ofessional help and supp ort, notably in the
early stages after the diagnosis. A major obstacle is that many ar e unfamiliar with the car e
system. The y also note d the ne e d for mor e formal and affor dable formal home car e b e cause
car e is only available for one or tw o hours a day and not at night. The y also e xpr esse d the
ne e d for me dical staff and so cial w orkers to tr eat themselv es and those in ne e d of car e with
gr eater empathy and kindness.
Most of the obstacles and ne e ds w e dete cte d in the inter vie ws w er e on the micr o and
mezzo le v els. Mor e than in the system (macr o le v el), car ers se e the r esp onsibility and bur den
of car e as r esting with the individual (micr o le v el) and institutions and the community
(mezzo le v el). Categorising and classifying ne e ds and obstacles on differ ent le v els, as with
our typ ology , also allo ws us to consider what r ole a so cial w orker can play on which le v el
with informal car ers. On the micr o le v el, as Co x ( 2007 ) notes, so cial w orkers can alr eady
enumerate forms of help for p e ople with dementia. Similarly , the y can allo w informal car ers
to e xplor e their fe elings, fears and concerns r elate d to the diagnosis. Supp ort and assistance
pr o cesses should aim to r e duce str ess by planning goals and car e that ar e not as str essful.
A ccor ding to the r oles of the so cial w orker describ e d by Mali et al. ( 2011 ), a so cial w orker can
function as a case manager on the micr o le v el. In this r ole , the y handle the co or dination of

Informal car ers of p e ople with dementia 105
pr ogrammes and ser vices that informal car ers ne e d, establish contacts with various ser vices,
and pr o vide assistance with rights. Dep ending on the ne e ds of the car er , the y may also
act as a teacher by pr o viding information, kno wle dge and insights ab out appr opriate and
quality car e for p e ople with dementia. The so cial w orker can act as a consultant, adopting a
holistic appr oach to offer help to individuals, families and communities, further e xploring
their ne e ds, identifying differ ent ways to achie v e the goals set and co-cr eating the desir e d
outcomes in a w orking r elationship with the car er and the p erson with dementia.
Roles in which micr o and mezzo le v el activities ar e inter w o v en ar e: facilitator , conne cting
informal car ers who ne e d help ( and cannot find it) with e xisting ser vices; an adv o cate ,
r epr esenting the inter ests of car ers ( when ne e ds ar e identifie d, p ointing out that much
co or dination with emplo y ers of informal car ers is r e quir e d due to the heav y bur den of
co or dinating the w ork life of the car er and car e of a p erson with dementia); and adv o cating
the pr ote ction of fundamental rights and dignity . Y et, the y can also act as a me diator , a
negotiator b etw e en p e ople and institutions. So cial w orkers themselv es ar e often in the r ole
of negotiator when helping to interpr et the ne e ds of informal car ers to others and r esolv e
conflicts.
The r ole of adv o cate can also inter v ene on the macr o le v el, such as to e xp ose and
eliminate discrimination, it also addr esses the system le v el and draws attention to the
changes that ne e d to b e made . In particular , the so cial w orker do es this in the r ole of an
activist, adv o cating for changes in p olicy and legislation.
A ckno wle dgement
This w ork was supp orte d by the Slo v enian Resear ch and Inno vation A gency 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 ( Grant No . J5-2567).
Refer ences
Batsch, N. L., & Mittelman, M. S. (2012). W orld Alzheimer Rep ort 2012: O v er coming the stigma
of dementia . Alzheimer’s Disease International. https: // www .alzint .org / u/ WorldAlz
heimerReport2012.pdf
Bradshaw , J. (1972). T axonomy of so cial ne e d. In G. McLachlan (Ed.), Pr oblems and pr ogr ess
in me dical car e: Essays on curr ent r esear ch (pp . 71–82). Nuffield Pr o vincial Hospital
T rust.
Br o daty , H., & Donkin, M. (2009). Family car egiv ers of p e ople with dementia. Dialogues in
Clinical Neur oscience , 11 (2), 217–228. https://doi.org/10.31887/dcns.2009.11.2/hbroda
ty
Chamb ers, D . E., W e del, K. R., & Ro dw ell, M. K. (1992). Evaluating so cial pr ograms . Allyn &
Bacon.
Co x, C. B. (Ed.). (2007). Dementia and so cial w ork practice: Resear ch and inter v entions . Springer .
Filip o vič Hrast, M., Hleb e c, V ., Kneže vić Hoče var , D ., Černič Istenič, M., K avčič, M., Jelenc-
Krašo v e c, S., Kump , S., & Mali, J. (2014). Oskrba star ejših v skupnosti: dejavnosti, akterji
in pr e dstav e [Elderly car e in the community: A ctivities, actors and r epr esentations].
Univ erza v Ljubljani, Fakulteta za družb ene v e de .
F laker , V ., Mali, J., K o dele , T ., Gr eb enc, V ., Škerjanc, J., & Ur ek, M. (2008). Dolgotrajna oskrba:
očrt p otr eb in o dgo v or o v nanje [Long-term car e: An outline of ne e ds and r esp onses].
Univ erza v Ljubljani, Fakulteta za so cialno delo .

106 Rihter and Hurtado Monarr es
Fran. (n.d.). Potr eba. In Slo var slo v enskega knjižnega jezika [Dictionar y of the Slo v enian
Standar d Language]. Retrie v e d July 2, 2023, fr om https :/ / fran . si / iskanje ? Query = potr
eba
Isaac, S., & Michael, W . B. (1995). Handb o ok in r esear ch and e valuation: For e ducational and
b ehavioral sciences (3r d e d.). Edits Pub .
Kitw o o d, T . M. (2005). Dementia r e consider e d: The p erson comes first . Op en Univ ersity Pr ess.
Leskošek, V ., & Hrženjak, M. (2002). Spr emenjene vloge ne vladnih organizacij [The change d
r ole of NGOs]. Mir o vni inštitut, Inštitut za so dobne družb ene in p olitične študije .
Mali, J., F laker , V ., Ur ek, M., & Rafaelič, A. (2018). Ino vacije v dolgotrajni oskrbi: primer domo v
za star e ljudi [Inno vations in long-term car e: The case of homes for the elderly ].
Univ erza v Ljubljani, Fakulteta za so cialno delo .
Mali, J., & Gr eb enc, V . (2021). Strategije razisko vanja in razv oja dolgotrajne oskrb e starih
ljudi v skupnosti [Strategies for r esear ch and de v elopment of long-term car e for the
elderly in the community ]. Založba Univ erze v Ljubljani.
Mali, J., Mešl, N., & Rihter , L. (2011). So cialno delo z osebami z demenco: razisko vanje p otr eb
oseb z demenco in o dgo v or o v nanje [So cial w ork with p e ople with dementia: Resear ch-
ing the ne e ds of p e ople with dementia and r esp onses to them]. Univ erza v Ljubljani,
Fakulteta za so cialno delo .
Merriam- W ebster . (n.d.). Ne e d. In Merriam- W ebster .com dictionar y . Retrie v e d July 2, 2023,
fr om https://www.merriam-webster.com/dictionary/need
Mese c, B. (2003). Mikr o , mezo , makr o: ekspanzija, integracija, sp e cifičnost so cialnega dela
[Micr o , meso , macr o: Expansion, integration, sp e cificity of so cial w ork]. So cialno
delo , 42 (4/5), 259–270.
Mese c, B. (2023). K valitativno razisko vanje v te oriji in praksi [ Qualitativ e r esear ch in the or y
and practice]. Inštitut za razv ojne in strateške analize .
Ministrstv o za zdravje . (2016). Strategija obvlado vanja demence v Slo v eniji do leta 2020.
http: // www. mz. gov. si/ fileadmin /mz .gov .si /pageuploads /Demenca /12092016 _ strategi
ja_obvladovanja_demence.pdf
Nago de , M., K o vač, N., Lebar , L., & Rafaelič, A. (2019). Razv oj so cialne oskrb e na domu:
o d b ese d k dejanjem [De v elopment of so cial car e at home: Fr om w or ds to actions].
Univ erza v Ljubljani, Fakulteta za so cialno delo .
Pitsenb erger , D . J. (2006). Juggling w ork and elder car egiving: W ork–life balance for aging
American w orkers. W orkplace Health & Safety , 54 (4), 181–187. https://doi. org/10.117
7/216507990605400408
Prince , M., Prina, M., & Guer chet, M. (2013). W orld Alzheimer Rep ort 2013: Journe y of caring .
Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport
2013.pdf
Queluz, F . N. F . R., K er vin, E., W ozne y , L., Fance y , P ., McGrath, P . J., & K e efe , J. (2020).
Understanding the ne e ds of car egiv ers of p ersons with dementia: A scoping r e vie w .
International Psy chogeriatrics , 32 (1), 35–52. https://doi.org/10.1017/s10416102190002
43
Ramo vš, J. (2003). K ako v ostna star ost: so cialna ger ontologija in ger ontagogika [ Quality age:
So cial ger ontology and ger ontagogy ]. Inštitut Antona T rstenjaka.
Rihter , L. (2022). Pr egle d ugoto vite v zaključnih del študentk in študento v Fakultete za
so cialno delo o so cialnem delu z ljudmi z demenco [ An o v er vie w of the r esults of
the final theses of students of the Faculty of So cial W ork on so cial w ork with p e ople
with dementia]. So cialno delo , 61 (2–3), 165–183. https://doi.org/10.51741/sd.2022.61.2
-3.165-183

Informal car ers of p e ople with dementia 107
Stuffleb eam, D . L. (1971). The use of e xp erimental design in e ducational e valuation. Journal
of Educational Measur ement , 8 (4), 267–274. https://doi.org/ 10.1111/j.1745- 3984.1971.t
b00936.x
Stuffleb eam, D . L., McCormick, C. H., Brinkerhoff, R. O ., & Nelson, C. O . (1985). Intr o duction
to ne e ds assessment. In Conducting e ducational ne e ds assessments (pp . 1–22). Springer .