A dvances in Metho dology and Statistics , 2023, 20 (2), 77–91. https://doi.org/10.51936/aczv5975
Resear ching the so cial asp e cts of dementia fr om a so cial
w ork p ersp e ctiv e
Jana Mali
a
, Ana Štambuk
b , ∗
a
Univ ersity of Ljubljana, Faculty of So cial W ork, Ljubljana, Slo v enia
b
Univ ersity of Zagr eb , Faculty of Law , So cial W ork Study Centr e , Zagr eb , Cr oatia
Abstract
The issues asso ciate d with dementia ar e challenging for so cial w orkers, who hav e a lot
of dir e ct contact with p e ople with dementia, as w ell as their supp ort netw orks. These
netw orks play a ke y r ole in the car e of p e ople with dementia. So cial w orkers differ fr om
other pr ofessionals in that the y ar e awar e of the urgency of attending to so cial justice , as
w ell as the implementation of human rights, participation and e quality . Re cognising the
e xp eriences of p e ople with dementia is of paramount r ele vance to so cial w ork, as it pr o vides
insight into their ne e ds and the aptness of e xisting forms of assistance in r esp onding to their
ne e ds. Thr ough this appr oach, those w orking in so cial w ork striv e to find ne w forms of help
to enable p e ople with dementia to liv e indep endently in their community . It is imp ortant
to find ways to inv olv e p e ople with dementia as activ e co-cr eators in the helping pr o cess
and in e xploring the so cial p ersp e ctiv es of dementia. In the pr esent pap er , w e pr esent the
literatur e r e vie w on e xp erience of r esear ching dementia fr om a so cial w ork p ersp e ctiv e in
Slo v enia and Cr oatia—tw o countries with similarities in the de v elopment of so cial w ork
and its r esear ch. The inclusion of p e ople with Alzheimer’s disease or dementia in r esear ch
is v er y comple x. Both pr ofessionals w orking with p e ople with dementia (formal car egiv ers)
and family memb ers (mostly informal car egiv ers) face various difficulties and pr essur es. It
is ther efor e imp ortant to consider r esear ch ethics and r esp e ct e xisting legal frame w orks
and informe d consent. An individualise d appr oach should b e use d to include p e ople with
dementia in r esear ch to me et their ne e d for p ersonal w orth and dignity ( despite numer ous
mental and functional deficits). Ultimately , all r esear ch should striv e to determine the true
situation of p e ople with dementia and their ne e ds, with the aim of using and de v eloping
their r emaining abilities to impr o v e the quality of life for b oth those p e ople and those who
pr o vide car e for them.
K e y w or ds: so cial w ork, dementia, ethics, user’s p ersp e ctiv e , ne e ds assessment
∗
Corr esp onding author
Email addr esses: jana.mali@fsd.uni-lj.si ( Jana Mali), astambuk@prav o .unizg.hr ( Ana Štambuk)
ORCID iDs: ( Jana Mali), ( Ana Štambuk)

78 Mali and Štambuk
1. Intr o duction
The incr ease in life e xp e ctancy is asso ciate d with various risks characteristic of older p e ople
( e .g., disease , p o v erty , so cial e xclusion). Among the many risks face d by older p e ople and
their so cial netw orks, which ar e asso ciate d with numer ous changes at the micr o le v el (the
le v el of older p e ople ’s liv es), the mezzo le v el (the le v el of ser vice organisation and ser vices
of help) and the macr o le v el ( state and so ciety ), is dementia. Although dementia is a disease ,
its conse quences ar e primarily so cial, affe cting p e ople with dementia as w ell as all those
close to them. The conse quences of dementia hav e a str ong impact on p e ople ’s e v er y day
liv es and interp ersonal r elationships (Bartlett & O’Connor , 2010 ; Innes, 2009 ; Marshall &
Tibbs, 2006 ).
It is estimate d that, in Slo v enia, due to the rapid ageing of the p opulation, the numb er
of p e ople with dementia will incr ease by 60 % by 2035 (Be dnaš & K ajzer , 2018 ); pr oje ctions
at the global le v el ar e similar—fr om 47 million in 2015 to 75 million in 2050 (W orld Health
Organization, 2017 ). In Slo v enia, ther e is no r egister of p e ople with dementia, but the pr e va-
lence of dementia (i.e ., calculate d on the basis of epidemiological data fr om neighb ouring
countries) was estimate d at 30 000 p e ople in 2010 (Petrič et al., 2016 ). T o day , ther e ar e
pr obably 40 000 p e ople living with dementia in Slo v enia, 5 % of whom ar e in old p e ople ’s
homes, with the r est living in the home envir onment. A s the disease mostly o ccurs in p e ople
o v er 65 y ears of age , the tr end of this disease will incr ease in line with the incr ease in the
pr op ortion of p e ople o v er 65, which is no w 20 % of the total p opulation in Slo v enia and will
r each 30 % in 2030.
A ccor ding to data fr om 2012, 80 864 p e ople in the Republic of Cr oatia suffer e d fr om
dementia, which corr esp onds to 1.89 % of the total p opulation (Mimica et al., 2015 ). Since
most of them w er e car e d for by family memb ers, the numb er of car egiv ers was estimate d
at 202 164 p e ople ( an av erage of 2.5 p e ople p er patient). The shar e of p e ople o v er 65 in
the total p opulation of the Republic of Cr oatia was 17.7 % in 2011 (Ostr oški, 2013 ). It was
estimate d that it could incr ease to 26.2 % in 2050. Lo oking at the data on the pr e valence of
dementia in r elation to age , an incr ease in patients is e xp e cte d: 5 % of p e ople o v er 65 suffer
fr om dementia, 10 % of p e ople o v er 75 and at least 40 % to 50 % of p e ople o v er 85 ar e in the
early stages of dementia (Mimica et al., 2015 ).
Due to the ne e d for help fr om others and esp e cially b e cause w e still do not kno w much
ab out the disease , p e ople with dementia ar e v er y stigmatise d. The stigma is also felt by their
r elativ es, who do not get enough supp ort and help in caring for their lo v e d ones in their
home envir onment, so p e ople with dementia often liv e in old p e ople ’s homes. In Slo v enia,
the most common form of car e for p e ople with advance d dementia is institutional car e (Mali
& K ejžar , 2019 ).
In the last de cade , the phenomenon of dementia has b e en the subje ct of much discussion,
r esear ch, de v elopment of ne w appr oaches and ways of w orking with p e ople with dementia in
various scientific disciplines and pr ofessions (Whitehouse & Ge orge , 2008). Each discipline
de v elops its o wn vie w of dementia. The most establishe d among the the or etical mo dels ar e
the biome dical mo del for understanding dementia and the psy chological and so ciological
mo del. Cantle y ( 2001 ) adds the philosophical-spiritual p ersp e ctiv e , while Mali et al. ( 2011 )
add the so cial w ork mo del for understanding dementia. The latter is not often mentione d in
literatur e , and it se ems that so cial w ork do es not hav e enough p o w er in so ciety against the
dominant sciences in the field of r esear ch on dementia, among which me dicine is assigne d
the leading r ole . Since w e kno w that the conse quences of dementia ar e mainly so cial, it
is r ele vant to de v elop sp e cific kno wle dge in so cial w ork to help p e ople with dementia.
Ther efor e , so cial w ork must hav e a r esear ch appr oach that inv olv es p e ople with dementia.

Resear ching the so cial asp e cts of dementia fr om a so cial w ork p ersp e ctiv e 79
The purp ose of this pap er is to highlight the sp e cific p ersp e ctiv es of r esear ch into the
so cial asp e cts of dementia and the r esults of e xisting national r esear ch in Slo v enia and
Cr oatia in the field of so cial w ork with dementia. In b oth countries, r esear ch in the field
of so cial asp e cts of dementia has b e en pr esent for mor e than a de cade and stems fr om a
qualitativ e or mixe d r esear ch appr oach, which is the pr e dominant appr oach in the field
of so cial w ork in b oth countries. Similar ethical issues and dilemmas r egar ding r esear ch
into so cial asp e cts of dementia ar e pr ominent in b oth countries. Our aim is to discuss
these in or der to stimulate further r esear ch in this ar ea and to inspir e the r esear ch and
pr ofessional community to undertake r esear ch into the so cial asp e cts of dementia. Such
appr oach is particularly r ele vant to enable a contemp orar y de v elopment of car e , which
incorp orates the p ersp e ctiv e of users, i.e ., p e ople with dementia and their families. When
car e users ar e activ ely inv olv e d in r esear ch, the y ar e emp o w er e d and their p osition in so ciety
is str engthene d. So cial w ork in practise and in the field of r esear ch has r ele vant e xp erience
r egar ding the implementation of the user p ersp e ctiv e and can also de v elop this further in
the field of r esear ch into the so cial asp e cts of dementia. For this r eason, w e will pr esent
a literatur e r e vie w on the so cial w ork r esear ch p ersp e ctiv e and the ethical consideration
of r esear ch on so cial asp e cts of dementia. In the se cond se ction, w e pr esent the rationale
for the de v elopment of so cial w ork with p e ople with dementia. The thir d se ction pr o vides
a historical literatur e r e vie w of r esear ch on the so cial asp e cts of dementia. The inclusion
of p e ople with dementia as participants in dementia r esear ch has taken place in r e cent
de cades, with Slo v enia and Cr oatia lagging far b ehind. The authors illustrate the various
ethical asp e cts of including p e ople with dementia in r esear ch and de v elop a discussion of
the asp e cts in se ctions four and fiv e . In or der to pr omote the inv olv ement of p e ople with
dementia in r esear ch and thus enable the de v elopment of dementia car e that is tailor e d to
the ne e ds of p e ople with dementia, the pap er concludes with a r efle ction on the b enefits of
inv olving p e ople with dementia in r esear ch on the so cial asp e cts of living with dementia.
2. Dementia: A challenge for so cial w ork
A particular fo cus of so cial w ork is to unco v er the ne e ds of p e ople with dementia to allo w
the forms of help available to p e ople with dementia and their families to me et their ne e ds,
aspirations and goals (Mo or e & Jones, 2012 ). Due to the widespr ead attitude of r eje ction
of dementia and the negle ct of p e ople with dementia, a r ele vant so cial w ork fo cus in this
case is emb e dde d in the concept of emp o w erment. Thompson and Thompson ( 2001 ) se e
the pr o vision of emp o w erment as a way of o v er coming the pr e vailing pattern of car e and
assistance pr o vide d to older p e ople . Emp o w erment is also ke y for family memb ers caring
for p e ople with dementia, as the y themselv es often face r eje ction fr om those ar ound them
and, mor e o v er , e xclusion fr om e v er y day life (Hill, 2015 ; Page et al., 2007 ). The fo cus on
emp o w erment enables p e ople with dementia to take r esp onsibility for their o wn liv es;
it supp orts them in gaining self-este em and awar eness of the value of their e xp eriences;
it str engthens their p osition, enables them to take on differ ent and value d r oles and use
differ ent sour ces of so cial p o w er to their advantage . Using the four le v els of living for p e ople
with dementia (i.e ., the implementation le v el, the interp ersonal le v el, the e conomic le v el,
and the ethical le v el), Mali et al. ( 2011 ) pr esent the e xp eriences of living with dementia and
highlight the p ossibilities of emp o w erment for p e ople with dementia.
The first le v el, i.e ., the implementation le v el, is r epr esente d by e v er y day life for p e ople
with dementia, the pr oblems the y face due to their dementia and the characteristics of the
help the y r e ceiv e . Continuous car e , the pr esence of familiar p e ople and a r egular rhythm of
car e ar e essential, as is also p ointe d out by Br y den ( 2005 ). The se cond le v el, the interp ersonal

80 Mali and Štambuk
le v el, r efers to p e ople ’s r elationships, so cial distr ess and so cial netw orks. Pe ople with
dementia hav e a str ong ne e d to establish and maintain contact with others (Kitw o o d, 2005 ),
but encounter many pr oblems in doing so . On the one hand, b onding is b eneficial, as it builds
mutual trust and helps to make life with dementia meaningful; on the other hand, p e ople with
dementia and their car ers struggle with str ess, conflict and e xhaustion (Challis et al., 2009 ;
Innes, 2009 ). The thir d, e conomic le v el, draws attention to the financial capabilities, means
of liv eliho o d and costs asso ciate d with caring for a p erson with dementia. The cost of car e
incr eases pr op ortionally to the pr ogr ession of the disease , as it r e quir es the use of additional
me dical aids, adaptation of accommo dation and, most imp ortantly , the organisation of
additional, often formal, car e (institutional and community ) (Hleb e c et al., 2014 ; Mali et al.,
2011 ). The fourth, ethical le v el, draws attention to the rights of p e ople with dementia, the
maintenance of r esp e ct and the pr esence of stigma. Practise underpinne d by the ethics of
car e w ould go a long way to war d advancing ethical car e for p e ople with dementia, with its
p otential to str engthen opp ortunities for e xpande d citizenship by facilitating participation
in car e (Brannelly , 2006 ).
Re cognising the e xp eriences of p e ople with dementia is highly r ele vant to so cial w ork,
as it giv es us insight into their ne e ds and the aptness of e xisting forms of help in r esp onding
to their ne e ds. Thr ough this appr oach, those w orking in so cial w ork striv e to find ne w
forms of help to enable p e ople with dementia to liv e indep endently in their community .
It is imp ortant to find ways to inv olv e p e ople with dementia as activ e co-cr eators of help .
This r e quir es pr ofessionals and family car ers to abandon the p ermanent r ole of pr o vider ,
which inv olv es a patr onising, o v erpr ote ctiv e and p ossessiv e attitude to war ds p e ople with
dementia (F laker , 2012 ). In so cial w ork, the aim is for patients and clients with dementia
to b e r e cognise d as p e ople with imp ortant life e xp eriences who also happ en to ne e d help
tailor e d to their ne e ds and who can contribute in their o wn way to ensuring that the help
pr o vide d me ets quality of life standar ds in the community . Car e that is tailor e d to the
p erson and base d on their ne e ds is also the central guiding principle of long-term car e for
p e ople with dementia and is dir e ctly linke d to so cial w ork the or y and practise (Gar dner ,
2014 ; McDonald, 2010 ).
The fo cus and orientation to war d the ne e ds of p e ople with dementia is base d on the o-
r etical pr emises of so cial w ork. These ar e deriv e d fr om the ne e ds of the users, in or der to
de v elop a daily r outine in co op eration with them that is adapte d, as much as p ossible , to
their ne e ds, wishes and abilities. The ne e ds of p e ople with dementia ar e often o v erlo oke d by
informal car ers ( e .g., family memb ers caring for a p erson with dementia who ar e unawar e
of their o wn ne e ds due to o v er w ork, and e v en less awar e of the ne e ds of the family memb er
the y ar e caring for ) and formal car ers ( e .g., so cial car e pr o viders, as practise sho ws that the
concept of ser vice users’ ne e ds is not central to their w ork).
A s w e e xplor e and r e cognise the ne e ds of p e ople with dementia, w e also disco v er the
skills and comp etencies of p e ople with dementia to liv e indep endently in their community .
The purp ose of r esear ching the ne e ds of p e ople with dementia is tw ofold. On the one hand,
w e aim to disco v er ne e ds that their car egiv ers may o v erlo ok and draw attention to users’
abilities and comp etencies for indep endent living. On the other hand, this information
allo ws us to assess the appr opriateness and success of the assistance pr o vide d.
In so cial w ork practise and in the field of r esear ch into the so cial asp e cts of dementia,
appr oaches to e xploring the ne e ds of p e ople with dementia ar e similar and base d on the same
pr emises. So cial w orkers, although w orking in practise , also take on the r ole of r esear chers
when pr o viding concr ete help to a p erson with dementia. In their pr ofessional w ork, the y
bring in the e xp eriences of r esear chers of the e v er y day liv es of p e ople with dementia.

Resear ching the so cial asp e cts of dementia fr om a so cial w ork p ersp e ctiv e 81
The metho dology of r esear ching the e v er y day life of p e ople with dementia is de v elop e d
the or etically and practically . One such e xample is the metho d of p ersonal planning and
implementation of ser vices, which is a so cial w ork metho d de v elop e d in Slo v enia base d on
the the or etical concepts of so cial w ork and the metho dology of r esear ch in so cial w ork.
By applying the metho d of p ersonal planning and implementation of ser vices base d on
r esear ch conducte d in the w orld of p e ople with dementia, w e aim to design the goals and
plan the use of those ser vices that ar e alr eady available to p e ople with dementia, as w ell
as ser vices that the y ne e d to acquir e in or der to achie v e their goals. The emphasis is on
the activ e inv olv ement of p e ople with dementia in the helping pr o cess, so that the metho d
can b e r ealise d, in constant dialogue and within the w orking r elationship with the users.
Thr ough the application of this metho d, the so cial w orker dir e cts the helping pr o cess in a
way that consistently takes into account the will of p e ople with dementia and emp o w ers
them by e xpanding their options and acceptable risks (Mali, 2019 ).
Personal planning and implementation of ser vices is a metho d that is also r ele vant to
so cial w ork, as it distinguishes the pr ofession of so cial w ork fr om other helping pr ofessions.
Thus, the metho d traces pr ofessional goals and implements their concepts while listening
to the v oices of users, which in so cial w ork ar e se en as the v oices of p e ople who e xp erience
distr ess, giving them a central r ole in the design and pr o vision of ser vices.
The journe y to de v elop the metho d of p ersonal planning and implementation of ser vices
in so cial w ork is base d on the combination of so cial w ork the or y , practice and r esear ch.
The e xp erience gaine d thr ough the de v elopment of this metho d sho ws that it is p ossible
to de v elop ne w metho ds of helping p e ople with dementia, along with the combination of
so cial w ork the or y , practice and r esear ch on the so cial asp e cts of dementia. Base d on the
e xp erience gaine d in de v eloping this metho d, it w ould b e ne cessar y to adapt other so cial
w ork metho ds to the sp e cific ne e ds of p e ople with dementia.
3. Resear ching so cial p ersp e ctiv es of dementia
In the international literatur e , r esear ch on the so cial p ersp e ctiv e of dementia has b e en
pr esent since the 1980s. W e can trace the conte xtually and metho dologically differ ent ways
in which r esear chers hav e r esp onde d to the call of curr ent so cial p olicy and the e conomic
and so cial issues pr omote d by e xisting go v ernment structur es. The issues of so cial science
and of the pr ofessions w er e not for egr ounde d, but rather the pr e vailing p olitics, which is
a comp elling backdr op compar e d to the curr ent situation, as dementia no longer elicits
sufficient attention fr om the pr e vailing p olitical structur es. The r etr eat of p olitics has allo w e d
pr ofessional issues to enter the field of r esear ch, and no w the r esear ch includes at least
tw o ar eas, namely (i) the user’s p ersp e ctiv e and (ii) the r esear ch in the o v erlo oke d issues,
esp e cially the phenomenon of dementia in so cially marginalise d gr oups (i.e ., migrants, older
w omen, p o orly-e ducate d p e ople).
Since the 1980s, w e hav e b e en able to follo w the so cial p ersp e ctiv es of dementia as
studie d in the international literatur e . The first r esear ch identifie d the characteristics of
informal car egiving—mor e sp e cifically , the conse quences of str ess and burnout, the various
bur dens imp ose d on b oth genders as a r esult of pr o viding car e , access to information and
available supp ort (Innes, 2009 ). The centr e of r esear ch was de v ote d to family car ers, se eing
them initially fr om a negativ e p ersp e ctiv e , but later , in the 1990s, fr om a p ositiv e p ersp e ctiv e ,
but r esear chers w er e not v er y fo cuse d on e xamining the genuine e xp erience of p e ople with
dementia. Pe ople with dementia w er e not the subje ct of r esear ch in any way , so w e learne d
nothing ab out the quality of informal car e in the first r ound of r esear ch.
The se cond wav e of r esear ch also did not inv olv e p e ople with dementia but rather

82 Mali and Štambuk
fo cuse d on the e xp eriences of formal car ers. Resear chers (Cantle y , 2001 ; Innes, 2009 ; Lynch,
2014 ) found that car e in this setting was pr o vide d by p o orly qualifie d staff who w er e p o orly
paid for the w ork the y did and w er e so cially negle cte d due to their gender and ethnicity .
Formal car e was pr o vide d by r epr esentativ es of marginalise d so cial gr oups, and the y car e d
for stigmatise d p e ople with dementia in facilities designe d for old p e ople (Innes, 2009 ). Later ,
r esear chers fo cuse d on e xploring formal car e within the community and lo oke d at to the
r ele vance of de v eloping car e b e y ond caring for a clean and fe d b o dy , as it b e came mor e
r ele vant that establishing go o d r elationships with p e ople with dementia, as w ell as ne w
metho ds and appr oaches to pr o viding help , w er e ke y (Feil, 1992 ; Kitw o o d, 2005 ).
The thir d wav e of r esear ch contribute d to a complete turnar ound, with the first r esear ch
in the late 1990s finally lo oking at the concr ete e xp eriences of p e ople with dementia (Innes,
2009 ). The r eason for this late inclusion of p e ople with dementia in the r esear ch was that
the pr ofessional community b elie v e d that p e ople with dementia w er e unable to commu-
nicate (Cantle y , 2001 ). The inclusion of p e ople with dementia encourage d a critique of
the formal deliv er y of car e , pr ofessional w ork and the de v elopment of high-quality car e
tailor e d to the ne e ds of p e ople with dementia. Resear chers paid attention to the o v erlo oke d
and lesser-kno wn issues, such as the o ccurr ence of dementia in p e ople y ounger than 60,
r epr esentativ es of ethnic minorities, p e ople living in rural ar eas, p e ople with comple x
health issues, etc. Resear ch into the pr e cise ne w phenomena on living with dementia dr e w
attention to finding ne w r esp onses to p e ople ’s ne e ds and ne w p ersp e ctiv es on help and car e .
Resear ch on the so cial p ersp e ctiv es of dementia in Slo v enia has only e xiste d for under
tw o de cades ( se e T able 1 ). Ne v ertheless, w e hav e follo w e d the r esear ch tr ends fr om the v er y
b eginning, bringing the user p ersp e ctiv e into the r esear ch, which is a conceptual guideline
of so cial w ork. In 2003, w e conducte d the first r ound of r esear ch b e cause w e w er e awar e
of the gap in this r esear ch ar ea, so w e use d contemp orar y r esear ch metho ds by bringing
in our o wn practice of user and action r esear ch. The study entitle d “W orking with p e ople
with dementia—de v eloping a mo del of tr eatment of p e ople with dementia” (F laker et al.,
2004 ), conducte d at the Faculty of So cial W ork in Ljubljana in 2003 and 2004, captur e d and
condense d the e xp erience of w orking with p e ople with dementia in old p e ople ’s homes.
Fr om 2005 to 2009, w e conducte d r esear ch on forms of community-base d car e for p e ople
with dementia (Mali, 2009 ). In 2014, w e b egan narrativ e r esear ch on dementia by colle cting
stories fr om family memb ers of p e ople with dementia ab out the liv es of their family memb ers.
Thr ough their stories, w e sho w e d ho w it was p ossible and meaningful to learn ab out the
w orld of p e ople with dementia in or der to stem fr om a living situation of a p erson with
dementia in the helping pr o cess (Mali, 2018 ).
O v er the past four y ears, our r esear ch on dementia has b e en de dicate d to de v eloping
practices base d on inter disciplinar y collab oration. In these pr oje cts, our kno wle dge fr om
so cial w ork was complemente d by various te chnical (Mali et al., 2016 ), humanities (Mali
et al., 2017 ) and so cial science (Mali et al., 2019 ) disciplines. On the one hand, this r esear ch
v erifie d and adde d to the kno wle dge and concepts of so cial w ork with p e ople with dementia,
while on the other , w e maintaine d the user p ersp e ctiv e with an adv o cator y stance and teste d
its application in collab oration with natural science disciplines.
Caring for p e ople with dementia is a v er y demanding task and r esear ch on the subje ct
often r ep orts on the str ess that car ers ar e confr onte d with. For this r eason, in our r e cent
r esear ch in Cr oatia, w e fo cuse d on b oth informal and formal car ers, on the pr oblems the y
face and on the b enefits that caring for p e ople with dementia brings. In our w ork, w e use d a
qualitativ e appr oach to understand the p ersp e ctiv e of (informal and formal) car ers (Štambuk
& Le vak, 2018 ; Tilinger & Štambuk, 2018 ). The findings obtaine d ab out informal (family )

Resear ching the so cial asp e cts of dementia fr om a so cial w ork p ersp e ctiv e 83
car egiv ers in the Zagr eb ar ea (Tilinger & Štambuk, 2018 ) p oint to numer ous pr oblems
face d by informal car egiv ers of p e ople with dementia. Namely , the y hav e to acquir e ne w
skills ne e de d for their ne w r ole as a car egiv er , which r e quir es a major adjustment and
r e organisation of their pr e vious life at all le v els, including struggles with full-time car e of a
p erson with dementia, additional house w ork, r ole conflicts, difficult communication due to
conv ersations ab out meaningless topics, and/or complete inability to communicate with the
p erson with dementia. Car ers also face inade quate so cial p er ceptions of their envir onment
and often fe el the public is not sufficiently e ducate d ab out the condition itself. Similarly ,
informal car ers face systemic issues including no options for institutional accommo dation
for the p erson with dementia or supp ort and assistance fr om pr ofessionals as these car ers
ar e also inade quately e ducate d. A s a r esult of this demanding natur e of car e , car ers r ep ort a
lack of time for leisur e activities, friends and family , leading to so cial isolation. Finally , a
major pr oblem for informal car egiv ers is their o wn impair e d psy chophysical functioning,
r efle cte d in burnout, sle ep pr oblems, and impair e d physical health. All these pr oblems p oint
to a v er y difficult p osition of informal family car egiv ers in Cr oatia. Resear ch on formal
car egiv ers (Štambuk & Le vak, 2018 ) sho ws that ther e ar e differ ent le v els of pr oblems the y
face . Thus, ther e ar e pr oblems of a p ersonal natur e that affe ct them (fe eling helpless and
e xhauste d), follo w e d by those r elate d to the organisation of w ork ( lack of staff, difficulty of
w orking night shifts, imp ossibility of an individualise d appr oach), and finally those r elate d
to the lack of understanding of family memb ers (p o or e ducation ab out the disease , r eje ction
and difficulty in adapting to the course of the disease , unr ealistic demands and distrust
of pr ofessionals). A wide range of r esp onses r elate d to the b enefits of car egiving w er e
categorise d into four themes: emotional fulfilment, incr ease d sense of meaning and purp ose
in life , p ersonal gr o wth, and a ne w p ersp e ctiv e on old p e ople . Although the b enefits of
car egiving for this p opulation ar e rar ely addr esse d in the r esear ch literatur e , kno wle dge of
them may p oint to some pr ote ctiv e factors that can help pr ofessionals cop e with the issues
that car egiving brings.
T able 1. Resear ch on so cial asp e cts of dementia in Slo v enia and Cr oatia
1 Resear ch title : W orking with p e ople suffering fr om dementia—pr eparation of tr eating mo del
for p e ople suffering fr om dementia in Slo v enian homes for the older p e ople (2003–2004,
Slo v enia) • Resear ch team : V . F laker , B. Kr esal, J. Mali, V . Miloše vič- Arnold, L. Rihter , I.
V elikonja • Resear ch topic : Car e for p e ople with dementia in old p e ople ’s homes • Metho d-
ological appr oach : Mixe d metho ds ( qualitativ e and quantitativ e)
2 Resear ch title : Living and supp ort forms for vulnerable gr oups of citizens (p e ople with de-
mentia, p e ople with pr otracte d mental disor der and mental deficiency ) in the municipality
of Ljubljana (2006–2008, Slo v enia) • Resear ch team : G. Čačino vič V ogrinčič, V . Gr eb enc, T .
K o dele , J. Mali, V . Miloše vič- Arnold, L. Rihter , J. Škerjanc, M. Ur ek • Resear ch topic : Forms
of community-base d car e for p e ople with dementia • Metho dological appr oach : Mixe d
metho ds ( qualitativ e and quantitativ e)
3 Resear ch title : Narrativ e appr oaches in so cial w ork with p e ople with dementia (2014,
Slo v enia) • Resear ch team : J. Mali, N. Žitek • Resear ch topic : Stories fr om family memb ers
of p e ople with dementia • Metho dological appr oach : Qualitativ e metho ds
ID Resear ch description
Continue d on ne xt page

84 Mali and Štambuk
T able 1. Resear ch on so cial asp e cts of dementia in Slo v enia and Cr oatia ( Continue d)
4 Resear ch title : T e chnological supp ort at the car e for p e ople with dementia in community
(2015, Slo v enia) • Resear ch team : J. Mali, A. K ošir , M. No vljan, M. Mihelin, M. Smolnikar , N.
Žitek, M. ten V e en, M. Kukolj, B. Penič, S. Smergut, K. V erb o všek Zabuko v e c, A. Deb e v c, Č.
Letnar , D . Sirnik • Resear ch topic : Inter disciplinarity in dementia r esear ch • Metho dological
appr oach : Qualitativ e metho ds
5 Resear ch title : Dementia disclosur e using artistic means of e xpr ession (2017, Slo v enia) • Re-
sear ch team : J. Mali, J. Zakonjšek, T . Gub enšek, G. Stibilj, A. T ajnšek, T . P lečko , K. Ličen,
L. Akif, M. V alič, N. Berger , S. Ivano v , V . Švigelj • Resear ch topic : Inter disciplinarity in
dementia r esear ch • Metho dological appr oach : Qualitativ e metho ds
6 Resear ch title : Fr e e dom of mo v ement in the liv es of p e ople with dementia (2019, Slo v e-
nia) • Resear ch team : J. Mali, A. K ejžar , D . Zupančič, S. Šegula, M. Mlinarič, Z. Go v e dič, L.
Fajko vić, E. Miklavčič, P . Fr e ce , R. Hirsch, N. Furlan, A. M. Mićić, D . V r enko • Resear ch topic :
Inter disciplinarity in dementia r esear ch • Metho dological appr oach : Qualitativ e metho ds
7 Resear ch title : Pr oblems of informal (family ) car egiv ers in the car e of p e ople with dementia—
a qualitativ e appr oach (2018, Cr oatia) • Resear ch team : A. Tilinger , A. Štambuk • Resear ch
topic : The p ersp e ctiv e of informal car ers • Metho dological appr oach : Qualitativ e metho ds
8 Resear ch title : The difficulties and b enefits of w orking with p e ople with dementia fr om the
p ersp e ctiv e of formal car egiv ers (2018, Cr oatia) • Resear ch team : A. Štambuk, K. Le vak • Re-
sear ch topic : The p ersp e ctiv e of formal car ers • Metho dological appr oach : Qualitativ e
metho ds
ID Resear ch description
The content of r esear ch on the so cial asp e cts of dementia in b oth countries r efle cts the
curr ent cir cumstances in the liv es of p e ople with dementia and their families. In the absence
of available national guidelines in this ar ea, r esear chers tend to e xplor e ar eas and issues
r ele vant to the science and pr ofession of so cial w ork. The ne e ds of p e ople with dementia and
their r elativ es ar e br ought to the for e , as this is essential to so cial w ork practise . This means
that futur e r esear ch should also addr ess the ethical dilemmas that arise during r esear ch in
this ar ea.
4. Ethics of r esear ch on the so cial p ersp e ctiv e of p e ople with dementia
A b etter quality of life for p e ople with dementia can b est b e achie v e d by raising awar eness
of and r esolving a numb er of ethical dilemmas that arise when w orking with p e ople with
dementia. This is often difficult. Sometimes these pr oblems se em insurmountable , and it
is difficult to de cide what to do b e cause it is not clear what is right or wr ong (Alzheimer
Eur op e , 2014 ). It is not always p ossible to giv e pr e cise solutions to sp e cific ethical dilemmas
b e cause w e cannot generalise ab out p e ople with dementia or their sp e cific life situations.
Ther efor e , the b est solution to an ethical dilemma differs fr om individual to individual and
do es not always r esult in an ideal situation; ne v ertheless, w e must striv e to solv e each
ethical dilemma in a way that is b est for the p e ople inv olv e d (Alzheimer Eur op e , 2014 ). One
way of analysing the le v el of car e fr om the p ersp e ctiv e of a p erson with dementia has b e en
pr op ose d by Brannelly ( 2006 ). She adv o cates for an ethic of car e in which the impact of
car e de cisions can b e assesse d using four criteria:
1. Attentiv eness: when the ne e ds of the p erson with dementia ar e upheld and the
car egiv er r elinquishes contr ol to emp o w er and r eaffirm the agency and citizenship of
the p erson with dementia.

Resear ching the so cial asp e cts of dementia fr om a so cial w ork p ersp e ctiv e 85
2. Resp onsibility: when practitioners identify conne ctions b etw e en themselv es and the
p erson with dementia.
3. Comp etence: when the p erson with dementia is enable d to set the outcomes of car e
that w ould b e go o d for them.
4. Resp onsiv eness: when the car e pr o vider understands the vie wp oint of the p erson
with dementia and pr o vides an opp ortunity to change the metho d of car e to make it
mor e suitable for the p erson.
The guidelines establishe d by Br ennelly in the field of caring for p e ople with dementia
can also b e applie d to the field of r esear ch on the so cial asp e cts of dementia. It is ther efor e
imp ortant to e xplor e ho w p e ople with dementia can b e inv olv e d in r esear ch in a way that
b est r efle cts their right to autonomy .
A s a disease-r elate d conse quence of dementia, p e ople with dementia ar e often dep endent
on other p e ople , but this do es not mean that their autonomy cannot b e foster e d in emerging
cir cumstances. Maintaining autonomy allo ws p e ople to shap e their o wn liv es accor ding to
their values and p ersonality in a way that fits their identity (Smeby e et al., 2016 ). Pr omoting
autonomy do es not only inv olv e r esp e cting the desir es and values p ossesse d in the early
stages of dementia, but also means that p e ople who b e come dep endent on others thr ough
the de v elopment of dementia may ne e d the supp ort of those who car e for them to continue
to maintain their autonomy and fe elings thr oughout later stages of the disease . Pr o viding
such supp ort r e quir es an understanding of what a p erson with dementia fe els, wants and
e xp eriences. A s p e ople with dementia e xp erience mor e se v er e cognitiv e de cline o v er time ,
this b e comes incr easingly difficult. Ho w e v er , as long as p e ople with dementia ar e still able
to liv e and e xpr ess their fe elings and ne e ds, it is imp ortant to enable their participation in
the r esear ch (Alzheimer Eur op e , 2014 ).
Of all the pr ofessions inv olv e d in the car e of p e ople with dementia, so cial w ork is the one
most committe d to ethical b ehaviour and concern for making ethical de cisions r egar ding
the liv es of p e ople with dementia. So cial w orkers ne e d to b e vigilant in putting the rights of
p e ople with dementia into practice and e xp osing any violations or discriminator y practices.
Similarly , such an appr oach must also pr e vail in the field of r esear ch on the so cial asp e cts
of dementia, so w e will pr esent the ethical p ersp e ctiv es of including p e ople with dementia
in the r esear ch in mor e detail.
5. Informe d consent and other legal principles r ele vant for r esear chers
When considering the ethics of e xploring the so cial p ersp e ctiv e of dementia thr ough the
inv olv ement of p e ople with dementia, the gr eatest ar ea of ethical uncertainty r elates to the
pr o cess of obtaining informe d consent. For informe d consent to b e valid, it is imp ortant
that p e ople with dementia b e informe d ab out the r ele vant asp e cts of the r esear ch and that
the y giv e their consent fr e ely (Sherratt et al., 2007 ). Fr e e and informe d consent r e quir es that
the whole pr o cess consists of dialogue , information sharing and de cision-making r egar ding
participation in the r esear ch (Slaughter et al., 2007 ). Informe d consent inv olv es, among
other things, the r esear cher ensuring that the r esear ch participants will not b e harme d in
any way and that their participation in the r esear ch will not harm them (Wilkinson, 2002 ).
Ther efor e , for individuals to b e comp etent in giving informe d consent, the y must b e able to
understand the information pr esente d to them and e valuate the p ossible conse quences of the
de cision made . A p erson’s ability to giv e informe d consent also varies accor ding to the le v el
of comple xity of the r esear ch subje ct, so ther e app ears to b e gr eater compatibility b etw e en
the abilities of a p erson with dementia and less comple x r esear ch pr o cesses (Sherratt et al.,
2007 ). K e yserlingk et al. ( 1995 ) emphasise that r esp e ct for p e ople with dementia r e quir es

86 Mali and Štambuk
that e v er y effort is made to help them understand the r esear ch subje ct as w ell as p ossible .
Ho w e v er , it is sometimes v er y difficult for e v en the most e xp erience d r esear chers to assess
the e xtent to which this understanding has b e en achie v e d, particularly when a p erson is in
the later stages of dementia (Sherratt et al., 2007 ).
It has often b e en argue d that r e duce d cognitiv e capacity is not a sufficient r eason to
e xclude p e ople with dementia fr om r esear ch, thus denying them their right to participate
in the r esear ch ar ound issues of gr eatest concern to them (Sherratt et al., 2007 ). Swain
et al. ( 1998 ) suggest that in addition to the right to privacy , p e ople with dementia also
hav e the right to b e “se en and hear d” . Furthermor e , e quality is the fundamental principle
of inclusiv e metho dology , base d on the pr emise that p e ople with dementia should b e
“value d and r esp e cte d as emb o die d, self-cr eating so cial actors” (Sherratt et al., 2007 ). If
w e ar e to pr omote the emp o w erment of p e ople with dementia, it is ne cessar y to w ork on
mor e inclusiv e r esear ch strategies that incorp orate the e xp eriences and visions of those
affe cte d (Wilkinson, 2002 ). Also , in r esp onse to the question of why p e ople with dementia
should b e include d in r esear ch, it can b e argue d that an understanding of the e xp erience of
living with dementia is ne cessar y and such an understanding cannot b e de v elop e d solely
thr ough participation by r epr esentativ es of p e ople with dementia (Wilkinson, 2002 ).
Berghmans and Meulen ( 1995 ) emphasise the r ele vance of the ethical principle of w ell-
b eing and the absence of adv erse effe cts for p e ople with dementia arising fr om their par-
ticipation in r esear ch. The y accept that participation in r esear ch rar ely brings individual
b enefits to that p erson, nonetheless the main aim of the r esear ch is to contribute to gr eater
awar eness and b etter car e in the futur e . Ho w e v er , by subje cting to these studies p e ople with
dementia who ar e unable to make an indep endent de cision ab out consenting to participate ,
the principle of ensuring w ell-b eing and the absence of adv erse effe cts of participation is
violate d. Berghmans and Meulen ( 1995 ) contend that this pr oblem can b e o v er come by
making a distinction b etw e en therap eutic and non-therap eutic r esear ch: while therap eutic
r esear ch b enefits the participants themselv es, non-therap eutic r esear ch has no dir e ct b enefit.
The y conclude that inv olving p e ople with dementia in studies wher e the y hav e no dir e ct
b enefit should b e illegal and is unethical.
Resear chers play a vital r ole in the pr o cess of obtaining informe d consent. In or der to
include p e ople with dementia in r esear ch delicately , it is imp ortant to e xplain the intention of
their participatio n in the r esear ch in a meaningful way . The moral character of the r esear cher
pr o vides the most imp ortant pr ote ction for p e ople with dementia (Span et al., 2017 ). T o
ensur e full pr ote ction for p e ople with dementia, r esear chers should use an individualise d
appr oach and se ek to assess the p erson’s r emaining cognitiv e abilities and understand the
e xtent to which consent can b e giv en (Sherratt et al., 2007 ). If a r esear cher determines that
a p erson is unable to giv e informe d consent, ther e is an obligation for r esear chers to obtain
b oth that p erson’s consent, as w ell as informe d consent fr om that p erson’s legal guar dian.
De wing ( 2007 ) states that consent inv olv es a r efle ctiv e pr o cess on the part of the r e-
sear cher , who must do the follo wing:
1. Make backgr ound pr eparations to gain access.
2. Establish the basis for consent: e .g., when and ho w to ask and on what basis to de cide
on the ability to consent.
3. Obtain initial consent thr ough v erbal, written or visual information.
4. Monitor ongoing consent; this will ensur e that visual or v erbal signs fr om participants
e xpr essing discomfort or str ess when participating in the r esear ch ar e taken into
account and that the initial consent do es not mean that an individual is r eady to
participate at all times.

Resear ching the so cial asp e cts of dementia fr om a so cial w ork p ersp e ctiv e 87
5. Pr o vide fe e dback and supp ort to car egiv ers as ne e de d r egar ding the p erson’s comfort
le v el and take notes on the r esear ch pr o cess for later p ersonal r efle ction.
Strategies to pr omote informe d consent include r e cognising the ne e d to adapt the
consent form to r efle ct changing cognition. This could include , for e xample: using simpler
language; supplementing w or ds with pictur es and/or cr eating pictorial consent forms; audio
r e cor ding consent, rather than r elying on written consent (Bartlett & O’Connor , 2010 ).
If it is de eme d ne cessar y to obtain informe d consent fr om a pr o xy , it is imp ortant to
ensur e that ther e is no conflict of inter est and that the pr o xy is acting in the b est inter ests
of the p otential r esear ch participant (Span et al., 2017 ). Pr eser ving a p erson’s autonomy
r e quir es that an authorise d r epr esentativ e , namely a legal guar dian, makes de cisions that
r esp e ct the pr e viously e xpr esse d values and b eliefs of a p erson with dementia. Ther efor e ,
it is ne cessar y that the guar dian is a p erson who kno ws the p erson with dementia w ell
enough to b e able to assume what de cision that particular p erson w ould hav e made in such
a situation b efor e the manifestation of dementia. The principle of the b est inter est of the
p erson with dementia (Cacchione , 2011 ) should b e applie d when giving informe d consent.
It is also imp ortant to supp ort family memb ers and car ers in de cision-making situations
ab out the e xtent of the user’s capacity to make indep endent de cisions. The principles set
out in the “Mental Capacity A ct” and “ A dults with Incapacity A ct” (Wilson, 2017 ) form the
basis of go o d practise for car ers of p e ople with dementia when the y find themselv es in
de cision-making situations. The ab o v e legal principles ar e also ethical principles that guide
the car e and supp ort of p e ople with dementia. It is imp ortant that a p erson is consider e d
capable until pr o v en other wise (Alzheimer Scotland, 2012 ). The traditional notion that
p e ople with dementia lack the capacity to identify their o wn inter ests has b e en r eplace d by
an attitude base d on the principle that the e xistence of capacity in p e ople with dementia
must b e assume d (Sherratt et al., 2007 ). Se condly , it must not b e assume d that a p erson is
not capable just b e cause the y once faile d to make a wise de cision. Thir dly , it is ne cessar y to
continually supp ort p e ople with dementia to make their o wn de cisions. It is also stipulate d
that any de cision or activity made on b ehalf of a p erson must b e in that p erson’s b est
inter ests. It is imp ortant to take into account the vie ws of the e xp erts as w ell as any past
and pr esent opinions, b eliefs and wishes of the p erson with dementia, whilst continually
encouraging the p erson to use their skills and de v elop ne w skills wher e p ossible (Alzheimer
Scotland, 2012 ). Situations in which p e ople with dementia ne e d to b e pr e v ente d fr om making
their o wn de cisions arise fr om the ne e d to maintain their w ell-b eing and av oid the harm
that p e ople with dementia could do or face if the y ar e not supp orte d (Smeby e et al., 2016 ).
A p erson with dementia should also b e able to withdraw fr om r esear ch at any time
without having to giv e r easons for withdrawal, pr o vide d that this do es not p ose a high
p otential risk to that p erson (Slaughter et al., 2007 ). It is imp ortant to note that the wishes
of p e ople with dementia may not always b e r esp e cte d and that the vie ws of car ers of p e ople
with dementia may not always r efle ct the vie ws of the p e ople the y r epr esent. In or der
to make r esear ch inv olving p e ople with dementia ethical, it is imp ortant that r esear chers
e xplain why the participation of p e ople with dementia in the r esear ch is r ele vant, what
risks the y may b e e xp ose d to during the r esear ch and why the purp ose of that v er y r esear ch
cannot b e achie v e d by e xcluding p e ople with dementia completely . It is always desirable
to se ek the consent of a guar dian, e v en if a p erson with dementia has the capacity to giv e
consent. It is imp ortant to consult the Ethics Committe e , e v en if not r e quir e d by law , for
constructiv e guidance . It is ne cessar y to ke ep r e cor ds of all pr o cesses and forms of consent
and assent. It is also essential to systematically monitor and consider the fr e quent changes
in the law in or der to r emain compliant (Sherratt et al., 2007 ).

88 Mali and Štambuk
6. Conclusion: Benefits of inclusion of p e ople with dementia in r esear ch
The incr ease d rate of inclusion of p e ople with dementia in r esear ch is the r esult of an ap-
pr oach base d on the principles of e quality , p ersonho o d, ethical car e and so cial justice (Slaugh-
ter et al., 2007 ). Furthermor e , the inclusion of p e ople with dementia in r esear ch contributes
to a de cr ease in depr ession, b etter quality of life , lo w er le v els of negativ e tension and higher
le v els of understanding in p e ople with dementia (Span et al., 2017 ). Indir e ct b enefits fr om
participating in r esear ch ar e notable , highlighting the opp ortunity to me et ne w p e ople ,
b e taken out of the daily r outine and de v elop a sense of usefulness. The most common
b enefits to an individual highlighte d by so cial r esear ch ar e a sense of emp o w erment and the
de v elopment of their sense of satisfaction and altruism (Sherratt et al., 2007 ). Such r esear ch
also holds b enefits for so ciety in general, the most significant of which, and the r eason
why some p e ople with dementia cho ose to participate in r esear ch, b eing to r emo v e other
p e ople ’s pr ejudices and fears ab out dementia.
The afor ementione d sense of usefulness, along with pr o viding information to so ciety ,
ser v es to maintain a b etter quality of life for p e ople with dementia (Span et al., 2017 ). The
long-term b enefits of inv olving p e ople with dementia in r esear ch on the so cial asp e cts
of dementia can change the p osition that p e ople with dementia hav e in so ciety , thr ough
their o wn emp o w erment. Although “ emp o w erment […] means differ ent things to differ ent
p e ople ” (A dams & A dams, 2008 , p . 17), ther e is some consensus on its br oad use as the
dynamic pr o cess by which individuals and gr oups gain or incr ease choice and contr ol o v er
the most imp ortant asp e cts of their liv es in or der to maximise their quality of life (Larkin &
Milne , 2014 ). Emp o w ering family memb ers caring for p e ople with dementia is also of ke y
r ele vance , as the y themselv es often face r eje ction fr om those ar ound them and e xclusion
fr om e v er y day life (Hill, 2015 ; Page et al., 2007 ).
Inv olving p e ople with Alzheimer’s or dementia in r esear ch is a v er y comple x ar ea. Both
pr ofessionals w orking with p e ople with dementia (formal car ers) and family memb ers
(mostly informal car ers) face various difficulties and pr essur es in their w ork. It is ther efor e
imp ortant to consider r esear ch ethics and r esp e ct e xisting legal frame w orks ar ound informe d
consent. An individualise d appr oach should b e use d to include p e ople with dementia in
r esear ch to me et their ne e d for p ersonal w orth and dignity ( despite numer ous mental and
functional deficits). Ultimately , any r esear ch study should lo ok at the implications for
determining the r eal situation of a p erson with dementia and their ne e ds, with t he aim of
using and de v eloping the r emaining capacities to impr o v e the quality of life for b oth that
p erson and those who pr o vide car e for them.
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- 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
A dams, R., & A dams, R. (2008). Emp o w erment, participation, and so cial w ork (4th e d.). Palgrav e
Macmillan.
Alzheimer Eur op e . (2014). Ethical dilemmas face d by car ers and p e ople with dementia . Re-
trie v e d Februar y 15, 2023, fr om https://www.alzheimer-europe.org/Ethics/Ethical-is
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