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How can libraries support dementia friendly communities? The study into perceptions and experiences of Croatian public librarians

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Abstract and Figures

Alzheimer’s Disease (AD), the most common cause of dementia, is an incurable neurological disease with an unknown cause. Since AD is not only social and health challenge but also an economic and fiscal burden and its prevalence is expected to grow exponentially as world population gets older, in 2012 the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) recognized dementia as a global public health priority. Although librarians have not generally been recognized as professionals caring for persons with dementia, recent research indicates that public libraries can contribute to the development of dementia friendly communities by supporting social inclusion, self-efficacy and capacity building of persons with AD, and by providing support to their informal caregivers (CGs). The research reported in this paper aims to examine the role of Croatian public libraries in building a dementia friendly communities, in a country where information, health and social care systems for AD patients and their CGs are not sufficiently developed (Rušac, 2016; Petr Balog et al., 2020). With the help of quantitative (online survey) methodology authors explore how Croatian public libraries tailor their spaces, collections, programs and services in order to enhance the everyday experience of persons with AD and their CGs.
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Education for Information -1 (2021) 1–19 1
DOI 10.3233/EFI-211560
IOS Press
How can libraries support dementia friendly1
communities? The study into perceptions and2
experiences of Croatian public librarians3
Sanjica Faletar Tanackovi´
ca, Kornelija Petr Balogaand Sanda Erdelezb
4
aDepartment of Information Sciences, Faculty of Humanities and Social Sciences, University of Osijek,5
Croatia6
bSimmons University School of Library and Information Science, Boston, MA, USA7
Received 15 September 20218
Accepted 15 September 20219
Alzheimer’s Disease (AD), the most common cause of dementia, is an incurable neurological disease
10
with an unknown cause. Since AD is not only social and health challenge but also an economic and fiscal
11
burden and its prevalence is expected to grow exponentially as world population gets older, in 2012 the
12
World Health Organization (WHO) and Alzheimer’s Disease International (ADI) recognized dementia as a
13
global public health priority.14
Although librarians have not generally been recognized as professionals caring for persons with
15
dementia, recent research indicates that public libraries can contribute to the development of dementia
16
friendly communities by supporting social inclusion, self-efficacy and capacity building of persons with
17
AD, and by providing support to their informal caregivers (CGs). The research reported in this paper aims
18
to examine the role of Croatian public libraries in building a dementia friendly communities, in a country
19
where information, health and social care systems for AD patients and their CGs are not sufficiently
20
developed (Rušac, 2016; Petr Balog et al., 2020). With the help of quantitative (online survey) methodology
21
authors explore how Croatian public libraries tailor their spaces, collections, programs and services in
22
order to enhance the everyday experience of persons with AD and their CGs.23
Keywords: Alzheimer’s disease, dementia, public libraries, dementia-friendly libraries, Croatia24
1. Introduction25
Alzheimer’s Disease (AD), the most common cause of dementia, is an incurable
26
neurological disease with an unknown cause. It starts gradually with memory loss but
27
over the course of this disease AD patients experience severe impairments of their
28
cognitive and physical abilities. In the final stage of the disease, persons diagnosed
29
with AD need around-the-clock supervision and care because they have difficulties
30
speaking, thinking and making decisions (Alzheimer’s Disease International, 2018).31
Corresponding author: Sanjica Faletar Tanackovi´
c, Department of Information Sciences, Faculty of
Humanities and Social Sciences, University of Osijek, Croatia. E-mail: sfaletar@ffos.hr.
0167-8329/$35.00 c
2021 – IOS Press. All rights reserved.
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2S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
This complex situation leads ultimately to a number of larger issues related to AD
32
patients human, legal and financial rights and the legal status of their CGs (Dološi´
c,
33
2016).34
World Health Organization estimated that in 2017 around 50 million people world-
35
wide had dementia, and approximately 10 million new cases are expected to be
36
reported every year (Alzheimer’s Disease International, 2015). AD is as much an
37
economic and fiscal burden as it is a social and health challenge. In 2012 the World
38
Health Organization (WHO) and Alzheimer’s Disease International (ADI) recognized
39
dementia as a global public health priority and called upon governments, policymak-
40
ers, and other stakeholders to implement sustained and coordinated action across
41
multiple levels, and develop national dementia plans and strategies (Dementia, 2012).
42
In countries, such as Croatia where information, health and social care systems for
43
AD patients are not sufficiently developed (Rušac, 2016), AD patients in most cases
44
depend fully on their informal CGs. These unpaid (and unskilled) non-professionals45
are in most cases their family members who supervise and support them during all
46
stages of the disease. However, caring for elderly family members with AD is an
47
arduous task with immense physical, psychological, emotional, social and financial
48
impact on the CGs whose needs often remain unmet (Novais et al., 2017; Dauphinot
49
et al., 2015, 2016). The care needs change as patients move from initial to final
50
stages of the disease, and CGs are not provided with adequate support. They often
51
give up on their interests, careers and free time; their health suffers and they end
52
up in the state of physical, emotional and mental exhaustion (burnout). In order to
53
minimize the CGs’ burden and understand how AD patients and their CGs could be
54
better served and supported, scholars from around the world researched their diverse
55
needs (Edelman et al., 2006; Tatangelo et al., 2018; Lai and Chung, 2007; Kucmanski
56
et al., 2016; Arévalo-Flechas et al., 2014; Brodaty and Donkin, 2009; Rosa et al.,
57
2009; Vaingankar et al., 2013; Uzun et al., 2019) and also explored characteristics of
58
dementia-friendly communities, which respect and cater for AD patients’ needs.59
2. Theoretical framework and background60
Dementia-friendly communities are physical and social environments made up of
61
individuals, businesses, organizations, and services that are responsive to the needs
62
of people with dementia, where they are understood, respected and supported. In
63
such communities people with dementia are productive members of society, they feel
64
welcome, included and involved, and have choice and control over their day-to-day
65
lives (Alzheimer’s Society PAS BSI, 2015). Recent studies reported, among others,
66
the following priorities and key outcomes of dementia friendly communities that can
67
be promoted and supported by libraries: removal of social stigma, increased awareness
68
and understanding of dementia, increased social and cultural engagement of persons
69
with dementia and improvement of the physical environment (Alzheimer’s Disease
70
Association, 2016; Gee & Croucher, 2016).71
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Although librarians have not generally been counted among professionals who
72
provide care to persons with dementia, recent research and practice indicate that
73
public libraries can improve the quality of AD patients’ life by supporting their social
74
inclusion, self-efficacy and capacity building (Howarth 2020; IGARD n.d.), enabling
75
them to participate in and make contributions to their communities (Diller, 2017).
76
The first step in this direction of thought was formally made by the International
77
Federation of Library Associations (IFLA) in 2007 through the publication of the
78
Guidelines for library services to persons with dementia. These guidelines stated that
79
most libraries at that point did not have special service for people with dementia
80
although their services are supposed to meet the informational and recreational needs
81
of all population groups, including persons with disabilities (IFLA, 2007). Nowadays
82
it has been widely accepted that libraries can enhance the everyday life experience of
83
people with AD and their CGs by becoming more dementia-friendly through careful
84
space planning, building responsive collections and providing inclusive services which
85
can help them become and remain included, accepted, engaged and connected to
86
their community (Pisel, 2020; Moller & Gregersen, 2020; Billington, 2018). This is
87
underpinned by Howarth who points out that cultural heritage institutions “have a
88
responsibility and a rationale for servicing those who have been marginalized across
89
time by what they have rather than who they are” (2020: 20) and a growing body
90
of evidence-based literature describing public libraries’ increasing involvement in
91
developing dementia-friendly society.92
Vincent (2018) for example points out that 38% of people living with dementia
93
feel lonely and isolated, which can lead to their early death. In this respect libraries
94
can support AD patients’ healthy ageing by increasing their participation in cultural
95
activities and maintaining their social networks. Since people with dementia often
96
find regular cinemas too busy and intimidating, Mansfield Central Library in the
97
UK, for example, organized in partnership with the independent cinema Broadway,
98
screenings of popular old-time movies in the supportive atmosphere of their local
99
library. Live music evening for patrons with dementia were organized also in the
100
Nottinghamshire County public library in the UK, because music can relax and unlock
101
forgotten memories (Vincent, 2018).102
A growing library focus on services for people with dementia has been encouraged
103
by recent studies, which established the benefits of varied nonpharmacological ther-
104
apies. Reading, an intellectual activity which lies at the heart of library work, was
105
recognized for its help in reducing the risk of dementia, delay of its onset.(Allen et
106
al., 2018) and improvement of dementia symptom-severity (Billington et al., 2013).
107
While AD causes progressive cognitive impairment including poor concentration and
108
poor working memory, which can lead to difficulties in attending to and retaining
109
information from books, storytelling and reading programs (in particular reading
110
groups, shared reading and reading aloud) are being offered to people with dementia.
111
The studies also revealed that people with AD may preserve their language skills and
112
the appreciation of complex language until later stages of the disease (Rimkeit &
113
Claridge, 2017; Cayton, 2004; Baker et al., 2018). Although there is lack of research
114
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4S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
about how people with dementia experience reading and what tools can be used to
115
help them enjoy reading (Rimkeit & Claridge, 2017), a systematic review of limited
116
research into the impact of reading on the health and wellbeing of people with neu-
117
rological conditions by Latchem (2014) revealed that there is reduced agitation and
118
increased engagement in people with dementia. Benefits of reading for people with
119
dementia include enjoyment of the music and rhythm of the literary classic, enjoyment
120
of the beauty and the inventiveness of the language, enhancement of personal identity
121
by stimulating memories, stimulation of cognitive performance by evoking memories
122
linked to the text, improvement of empathy with others through connections with their
123
options and feelings about the text and reduction of stigma if book groups are held in
124
the public library (Baker et al., 2018). This is supported by Latchem and Greenhalgh
125
(2014) who reported that both lone and shared reading evoke memories, facilitate
126
social connection, self-expression and feelings of personhood.127
Rimkeit and Claridge (2017) conducted a qualitative study that investigated how
128
people living with dementia experience reading. They identified modifications of
129
original literary texts and described memory aids that can support memory deficit
130
while preserving the stimulation of the original language. The authors suggested that
131
adaptations of original texts should include: a cast of characters, reduction of the
132
amount of text chunking down the story, and regularly repeating referents on each
133
new page (for example, repeating the name Scrooge instead of using the pronoun
134
he) Participants in their study appreciated short chapter summaries throughout the
135
adapted novel, large fonts, and clear print with adequate contrast on white paper, the
136
curves of the san serif type and the adult look of the book. Rimkeit and Claridge
137
(2017) also suggested importance of retelling familiar classic stories of high quality
138
in episodic form; preserving as much as possible of original language and syntax;
139
and using illustrations that are not child-like to enliven the story. There is no need to
140
“dumb down” the vocabulary of a literary text and its syntax can remain relatively
141
sophisticated. People with dementia should not be stigmatized and infantilized by
142
being offered children’s reading material because this can damage their well-being
143
and self-identity, making their behavior more defensive and challenging (Maron
144
& Powell, 2014; Salari, 2006). Kelsey (2018) suggests that books can be helpful
145
even for persons with dementia who cannot read any longer. Since the experience
146
of just holding a physical book can be comforting, he recommends libraries to set
147
up bookshelves or bookcases with discarded books at local memory facilities so that
148
their patrons can browse them and permanently check them out. Nevertheless, due to
149
inadequate social and community support to motivate and encourage reading, many
150
people with dementia forego reading early in the course of their disease, and lose
151
their favourite pastime activity that might improve their cognition and the quality of
152
life (Moos, 2011; Billington, 2013; Rimkeit & Claridge, 2017).153
Besides offering reading programs, libraries often support reminiscence or memory
154
therapy, a treatment that uses all the senses to help individuals with dementia remem-
155
ber events, people and places from their lives by providing so called memory kits or
156
bags. These take-home kits contain activity books, adult and/or children fiction on a
157
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theme of dementia, creative projects, objects for hands-on activities (e.g. childhood
158
toys), board games, crafts from earlier decades, photographs, movie, sing-along music
159
and exercise/relaxation CDs, local memorabilia etc. These objects stimulate the senses
160
and remind those living with AD of the things that happened previously in their lives.
161
Reminiscing to encourage conversation and rekindle memory has been a widely used
162
method because this kind of cognitive stimulation therapy slows the progression of
163
the disease. Evoking memories can reinforce person’s identity thereby increasing
164
the quality of life, or it can produce a moment of good feeling about something
165
recognizable (Larsen, 2007). For example, Sefton Library Services in the UK visits
166
homes and care homes to record the life stories of local people in the first stages
167
of memory loss to provide a reminiscence tool for the patients’ care in later stages.
168
These recorded stories about childhood, family and working life, hobbies etc. help
169
care workers to establish a rapport and find topics for conversation (Vincent, 2018).
170
Memory kits often contain helpful materials for CGs, such as personal stories and
171
similar readings that can help them understand what to expect and how to deal with
172
their family members’ disease. The kits also provide information on available support
173
in the community (contact information for local health and social care services and
174
dementia organizations) and ideas on how to engage family members with dementia
175
and spend quality time with them. The studies increasingly demonstrate that effects of
176
dementia can be mitigated with regular, personal engagement and intellectual activity.
177
As the key community partners, public libraries can also help address the lack
178
of public awareness about dementia, and the social stigma that affect the patients’
179
poor self-perception, social isolation and lack of possibilities to participate in the
180
community life (Pisel, 2020). This can be done by dissemination of information and
181
organizing a variety of informational, educational, social, creative, and recreational
182
person-centered library programs for the people with dementia, their CGs, and the
183
general public in trusted and non-stigmatized community spaces. Living library, a
184
relatively innovative concept in library world, could serve as a framework for active
185
conversations about dementia, and an excellent opportunity for the public to overcome
186
prejudices and to improve understanding of dementia through “borrowing” real people
187
with personal dementia experience (Alzheimer Europe, 2018).188
Library programs for people with dementia can also be enhanced by using technol-
189
ogy. For example, some libraries show YouTube clips of old-time movies and music
190
in their programming. Also, immensely popular library activities for both concerned
191
citizens and people with AD and their CGs are Memory Walks and Memory Cafés.
192
Memory Walks are events where concerned members of community walk together to
193
support people living with dementia and to raise awareness about AD. These events
194
are typically organized during September and October, on the occasion of World
195
Alzheimer’s Day and World Alzheimer’s Month. Memory Cafés are comfortable and
196
safe places where people with dementia socialize and spend quality time sharing
197
conversations, activities and experiences in an informal, café-like environment with
198
other people with dementia and the general public (Charbonneau & Rathnam, 2020;
199
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6S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
Howarth, 2020). These can be accompanied by therapeutical music and art programs,
200
legal advising, or financial planning session, etc.201
Since dementia can cause perceptual and navigational problems, libraries should
202
make sure they offer friendly and calming space with no physical impediments or
203
restrictions in the building itself. Dementia enabling environment principles should be
204
applied to design and decoration of library physical spaces (Pisel, 2020), taking into
205
consideration all aspects of library design: lightning and reflections, colours, flooring
206
and surfaces, type and style of furniture, patterns and fabrics, noise levels, signage
207
and signposting etc. An important part of this process is to learn about special needs
208
of people with AD and involve them in the refurbishment process (Taylor, 2018; Best
209
Azheimer’s Products, 2018).210
In designing engaging and responsive programs and services libraries must collab-
211
orate with professions in the field (Mortenson & Neilsen, 2007) and build partnerships
212
with relevant health, cultural and educational institutions and civic organizations. In
213
such collaborations rich programs involving music, dancing, art, laughing and even
214
therapy animals can be developed (McDermott et al., 2014; Kelsey, 2018; Dickey,
215
2020). In all of these efforts libraries should always prioritize the experiences of
216
persons with dementia and those who care for them because their voices should be
217
at the heart of all their programs aimed at creating dementia-friendly communities.
218
Therefore, before developing and implementing any services for people with AD,
219
libraries should ask them what can be done to improve their everyday lives (Gee &
220
Croucher, 2016). It is also prerequisite that library staff providing services to persons
221
with AD is knowledgeable of dementia related diseases and skilled in communicating
222
with AD patients by using respectful, easily-understood and supportive language.
223
They should also always try to take part in ongoing training and increase their un-
224
derstanding of disease and the challenges that people with AD meet (Pisel, 2020;
225
Mortenson & Neilsen, 2007).226
Finally, libraries should pay special attention to the promotion and marketing of
227
their services for people with dementia by reaching out to those socially isolated
228
and often lonely people in their homes or care facilities. Libraries should use every
229
opportunity to present their programs to patrons at care facilities and community
230
organizations. To facilitate the adoption and dissemination of dementiafriendly li-
231
braries movement, public libraries should share their best practices both nationally
232
and internationally.233
3. The study234
This paper contributes to the emerging information science interest in AD (Erdelez
235
et al., 2015; Harland & Bath, 2008: Howarth, 2020) and adds to the understanding of
236
the role of Croatian public libraries in developing a dementia friendly community.
237
The research reported in this paper builds upon the results obtained in the research
238
project Information needs of AD patients and their caregivers funded by University
239
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 7
of Osijek, Croatia (https://www.ffos.unios.hr/projekti/alzheimer/index.php). It aims
240
to contribute to practical implications of the project by examining the role of public
241
libraries in building dementia friendly communities. The study sets off from a premise
242
that people with AD are respected and valuable members of their communities, that
243
they should participate in these communities and enjoy meaningful lives. This research
244
explores how Croatian public libraries tailor their spaces, collections, programs and
245
services to enhance the everyday experience of persons with AD and their CGs, and
246
in particular their access to education, cultural enrichment (books, art, music etc.),
247
creative recreation etc.248
3.1. Research questions249
The aim of the study is to learn how well do Croatian public libraries serve the
250
needs of AD patients. The study will try to answer the following research questions:
251
RQ1: How do respondents perceive AD and how knowledgeable of AD are they?
252
RQ2: Do respondents believe PL can contribute to the development of dementia-
253
friendly communities?254
RQ3: What kind of resources, services, and programs for AD patients and their
255
CGs do Croatian public libraries provide?256
RQ4: What kind of training do librarians have to respond to the needs of AD
257
patients and their CGs?258
RQ5: Are physical spaces of Croatian public libraries fit for use by AD patients?
259
RQ6: Are there any differences between library approaches to dementia services
260
in relation to their size, community etc.?261
3.2. Methodology and sample262
The data were collected by an online survey that was distributed to all public
263
libraries in Croatia (
n=
195) in the period between March 1
st
–18
th
, 2021. It was
264
recommended that survey be filled out by a senior member of the library management
265
(head or their deputy) since they are best informed about library activities and they
266
participate actively in library planning and decision- making process. Survey questions
267
dealt with topics related to librarians’ personal knowledge and attitudes about AD,
268
the role of libraries in developing dementia-friendly communities and library services
269
(spaces, collections, programs, services, etc.) tailored for that particular user group in
270
their institution.271
The survey was completed by 71 libraries (61 complete and 9 partial responses)
272
from across the country. A response rate is estimated at 36.4%. Although respondents
273
come from 19 out of 21 Croatian counties (country’s main administrative units),
274
counties with less than three respondents (see Table 1) are listed under the category
275
Other. While respondents come from libraries of different sizes, the highest number
276
cater to the population up to 5,000 inhabitants (n=26, 36.6%). Only three libraries277
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8S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
Table 1
Sample demographics
Sample N (%)
Respondents’ function Head/deputy 60 (84.5)
Other position 10 (14.3)
Missing 1 (1.4)
Respondents’ gender Female 62 (87.3)
Male 6 (8.5)
Missing 3 (4.2)
Respondents’ age 50–65 25 (37.9)
40–49 22 (33.3)
30–39 18 (27.3)
Missing 4 (5.6)
Respondents’ work experience 11–20 years 30 (44.1)
21–35 years 19 (27.9)
1–5 years 10 (14.7)
6–10 years 9 (13.2)
Missing 4 (5.6)
County Split-Dalmatia 9 (12.7)
Zagreb 7 (9.9)
Osijek-Baranja 7 (9.9)
Sisak-Moslavina 5 (7.0)
Šibenik-Knin 5 (7.0)
Primorje-Gorski Kotar 5 (7.0)
Zadar 5 (7.0)
Karlovac 4 (5.6)
Other 46 (64.8)
Number of library users 1–1.000 40 (56.3)
1.001–3.000 13 (18.3)
6.001–10.000 7 (9.9)
10.001–30.000 6 (8.5)
3.001–6.000 4 (5.6)
Missing 1 (1.4)
Local population 0–5000 26 (36.6)
10.001–30.000 18 (25.3)
5.001–10.000 13 (18.3)
30.001–60.000 8 (11.3)
100.000–120.000 3 (4.2)
60.001–99.999 2 (2.8)
Missing 1 (1.4)
Number of employed librarians 1 26 (36.6)
2–4 21 (29.5)
5–10 8 (11.2)
11–20 7 (9.8)
21–55 3 (4.2)
0 6 (8.8)
from the sample cater to the population over 100,000 (4.3%). Majority of the libraries
278
in the sample employ only one (
n=
26, 36.6%) professional librarian. On average,
279
survey was filled out by female respondents (
n=
62, 87.3%) employed as the head
280
of the library or the deputy (
n=
60, 84.5%), aged 50–65 (
n=
25, 37.9%) and with
281
more than 10 years (n=49, 69.0%) of library working experience (Table 1).282
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 9
Table 2
Respondents’ most feared diseases
Disease N (%)
Cancer 54 (76.1)
Stroke 48 (68.6)
AD 35 (49.3)
Heart attack 26 (36.6)
Depression 8 (11.3)
COVID-19 3 (4.2)
Diabetes 1 (1.4)
Other 4 (5.6)
Missing 4 (5.6)
4. Results283
4.1. Perception and knowledge of AD284
The first section of the survey tried to identify the respondents’ perception and
285
knowledge of AD. Although majority of the respondents did not have a direct contact
286
with the disease (
n=
45, 63.4%), almost a quarter did know somebody who has or
287
had a disease: 19 (26.8%) had a friend, neighbor, or acquaintance with AD, and 4
288
(5.6%) a family member. Respondents perceived AD as a daunting illness: it was
289
ranked as the third (49.3%) most feared diseases, following cancer (76.1%) and stroke
290
(68.6%) (Table 2).291
Next, respondents were asked to indicate their level of agreement with the set of
292
statements about AD disease and AD patients in general. Their responses show that
293
they are quite knowledgeable about the disease. For example, although 28 (39.4%)
294
respondents believe, incorrectly, that dementia is an integral part of old age, all but
295
one responded correctly that it is not curable and 58 (81.7%) correctly indicated
296
that even people younger than 65 can get AD. Furthermore, the respondents do not
297
stigmatize AD stating overwhelmingly (98.6%) that one should not be ashamed of
298
their family members with AD and that AD patients should be involved in celebrating
299
family events such as weddings, birthdays, etc. (81.7%). However, almost 10% claim
300
incorrectly that AD patients cannot enjoy reading due to their declining cognitive
301
competences (see Table 3).302
4.2. Public libraries and dementia-friendly communities303
In order to understand their perceptions about the role of public libraries in building
304
dementia-friendly communities, the respondents were asked to express on a scale
305
1–5 (1
=
low; 5
=
high) their level of agreement with various statements related
306
to either library services for AD patients and their CGs in general, or such library
307
services offered by their libraries. On one hand, findings show that respondents, on
308
average, believe that libraries should help create dementia-friendly communities (4.4),
309
that AD patients (particularly those in early stages of the disease without significant
310
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10 S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
Table 3
Perception and knowledge of AD
Statement In agreement N (%)
People younger than 65 can get AD 58 (81.7)
AD patients should be involved in all social events 58 (81.7)
Dementia is an integral part of old age 28 (39.4)
AD patients receive appropriate level of care (health, social, etc.) in Croatian
society
14 (19.7)
Majority of AD patients are in institutional care 12 (16.9)
AD patients cannot enjoy reading due to declining cognitive competencies 5 (7.0)
AD is curable 1 (1.4)
It is better not to talk about a family member with AD 1 (1.4)
Missing 9 (12.7)
Table 4
Public libraries and dementia-friendly community
Statement Mean
AD patients (particularly those in early stages of the disease without significant intellec-
tual difficulties) should have access to adequate library services.
4.7
Appropriate library services can contribute to quality of life of AD patients and their
CGs.
4.5
Libraries should raise awareness about AD in their communities. 4.4
Libraries should help create dementia-friendly communities. 4.4
Library schools should educate future librarians about the importance of library services
for AD patients and their CGs.
4.4
Librarians should be familiar with basic information about dementia and how to commu-
nicate with AD patients.
4.3
Librarians should have access to continuous education courses related to library services
for AD patients.
4.2
Stakeholders (financiers) should financially support public libraries in creating services
for AD patients and their CGs.
4.2
AD patients (particularly those in early stages of the disease without significant intellec-
tual difficulties) have access to appropriate materials and services in my library.
3.9
In our communities there are too few AD patients for libraries to create special collections
and services only for them.
2.9
Public libraries cannot cater to the needs of all user groups in their area. They must
choose one primary group and tailor the services for that group.
2.7
Missing 9 (12.7%)
intellectual difficulties) should have access to adequate library services (4.8) and
311
that appropriate library services can contribute to the quality of their life (4.5). On
312
the other hand, the findings indicate that this general attitude does not translate into
313
practice as respondents are on average less in agreement with the statement that actual
314
library services for this user group are offered in their libraries (3.9). Respondents
315
further believe that professional librarians should have knowledge about AD, and that
316
it should be obtained both through formal education at university level and continuing
317
professional education (Table 4).318
4.3. Dementia-related library services319
A large majority of respondents (
n=
53, 74.6%) reported that they did not have
320
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 11
Table 5
AD materials in the libraries
Type of materials N (%)
popular and professional literature on dementia (non-fiction) 44 (61.9)
adult fiction on dementia 34 (47.9)
illustrated materials (e.g., animals, flowers, vintage cars) not primarily aimed for children
34 (47.9)
professional literature for family members (e.g., psychological support, how to spend
quality time with AD patients)
33 (46.5)
materials suitable for reading aloud 17 (23.9)
children’s picture books on dementia 15 (21.1)
non-book materials for AD patients (e.g., photographs, sensory toys, puzzle, etc.) 5 (7.0)
dementia-friendly fiction (e.g., Marlena books) 3 (4.2)
Nothing 8 (11.3)
Missing 9 (12.7)
AD patients as library members. This finding indicates that without AD members,
321
these libraries also do not offer any specific services (activities and programming) to
322
persons diagnosed with AD. Only ten respondents indicated that their membership
323
includes AD patients and their CGs, and that these members have special benefits
324
in their libraries, such as free membership (
n=
1, 1.4%), longer loan time (
n=
5,
325
7.0%), and delivery of materials at their doorstep (
n=
5, 7.0%). Nine respondents
326
did not reply to this question.327
In this section of the survey, the respondents were further asked about their
328
dementia-related collections and activities (programming). The responses to the
329
question on AD materials in the study sample indicate that in most cases libraries
330
have dementia-related materials targeting general public and CGs: non-fiction (61.9%)
331
and fiction (47.9%) for adults. To a much lesser degree they have dementia-friendly
332
materials that can be used by AD patients. Only three (4.2%) libraries have dementia-
333
friendly fiction and five (7.0%) have non-book materials. This finding indicates that
334
studied libraries are much better stocked for building understanding of AD among
335
general public and CGs, creating dementia-friendly communities, than for serving the
336
needs of AD patients themselves. This does not come as a surprise because engaging
337
AD patients in libraries and designing services and programs for them involves sub-338
stantial resources including staff time and their competences, funding for acquisition
339
of adapted material etc. Eight libraries that claimed not having any materials related
340
to AD topics come from different counties, but three out of those eight libraries cater
341
to the smallest communities (up to 5,000 inhabitants) and employ no professional
342
librarians. Three libraries cater to slightly larger populations (5,001–10,000), with
343
two of them employing one professional, and the third employing no professionals.
344
The remaining two libraries (among the eight) cater to populations between 30,000–
345
80,000 inhabitants and employ a significant number of professionals (15 and 40,
346
respectively).347
Respondents were then asked about specific activities, programs and services that
348
their libraries offer to AD patients and their CGs (Table 6). Having in mind the
349
number of respondents who reported that they do not have AD patients among their
350
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12 S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
Table 6
Library programming for AD patients and their CGs
Activity, program, service N (%)
celebration of World Alzheimer’s Day/World Alzheimer’s Month 7 (9.9)
delivery of materials at patrons’ doorsteps 7 (9.9)
providing space to various associations and individuals for activities related to AD (e.g.,
Memory Café)
7 (9.9)
referring to useful online sources (through library web pages or social networks) 6 (8.5)
exhibitions on AD 5 (7.0)
individual meetings to help select reading materials, retrieve necessary information, etc.
4 (5.6)
distribution of free/promotional materials on AD 3 (4.2)
creative workshops for AD patients and their CGs 2 (2.8)
reading activities (e.g., reading-aloud) for AD patients and their CGs 1 (1.4)
programs and activities (e.g., workshops, lectures, book promotions) with the goal of
raising awareness among the general population about this disease
1 (1.4)
We do not have any activities for this user group, but are considering them 12 (16.9)
We do not have any activities for this user group, nor we are considering them 2 (2.8)
Missing 48 (67.6)
membership (74.6%), it does not come as a surprise that as many as 48 respondents
351
(67.6%) left this question unanswered. Out of 71 libraries that responded to this survey,
352
only 15 libraries altogether stated that they offer some kind of activities and programs
353
for AD patients and their CGs. In most cases, libraries celebrate the World Alzheimer’s
354
Day or World Alzheimer’s Month (9.9%), deliver library materials to patrons’ homes
355
(9.9%) and provide space to various associations and individuals for activities related
356
to AD (9.9%). Only two (2.8%) libraries offer creative workshops for AD patients and
357
only one (1.4%) organizes reading activities for this user group. However, none of the
358
libraries offers social and recreational activities (e.g., plays, talks) or informational
359
and educational activities (e.g., lectures) for AD patients and their CGs. Our analysis
360
shows that 9 (60.0%) out of those 15 libraries operate in communities with more than
361
10,000 inhabitants, employing between 2–20 professional librarians. Two libraries
362
(13.3%) cater to populations of 100,000 inhabitants and larger, employing 15 and 33
363
professional librarians, respectively. The remaining four libraries (26.7%) operate
364
in the smallest communities (up to 5,000 inhabitants) and employ between 1–3
365
professional librarians. The libraries that offer most services for this underserved user
366
group include one library from the City of Zagreb and one from the Karlovac county.
367
These two public libraries offer each six various activities, programs or services. Both
368
of these libraries cater to the populations between 30,000–60,000 inhabitants, and
369
employ between 10–20 professional librarians.370
Several questions were designed to provide more detail regarding AD library
371
services and were answered only by those 15 libraries that stated that they offer
372
some kind of activities for AD patients and their CGs. Findings indicate that, when
373
providing dementia-related activities, studied libraries often have partners. They
374
cooperate most frequently with associations for retired persons and people with
375
dementia (
n=
6, 8.5%), followed by health or educational institutions and some
376
other communal institutions such as retirement homes or AD day care facilities (
n=377
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 13
Table 7
Challenges in organizing activities for AD patients and their CGs
Challenge N (%)
absence of accessible AD patients register in my community 15 (21.1)
difficulty in reaching out to AD patients (e.g., do not live in an organized type of living,
do not come to library)
12 (16.9)
librarians do not possess enough information and knowledge to introduce activi-
ties/services which might help solve their problems and/or raise their life-quality
12 (16.9)
insufficient resources (finances, staff, space) 10 (14.1)
too few potential users (AD patients) in the community 9 (12.7)
AD patient’s lack of interest 8 (11.3)
too many other obligations and activities in the library 7 (9.9)
lack of appropriate written materials in Croatian 5 (7.0)
lack of specialized non-book materials in the Republic of Croatia 3 (4.2)
Missing 48 (67.6)
5, 7.0%). Only one library cooperates with cultural institutions such as theatres or
378
museums (1.4%).379
The organization of activities for AD patients and their CGs creates numerous
380
challenges for the libraries in the study sample (Table 7). Apart from librarians’
381
lack of competences about AD (
n=
12, 16.9%) and insufficient resources (
n=
10,
382
14.1%), identifying and reaching AD patients (27, 38.0%) was identified as the largest
383
challenge. On the one hand this is true because, apart from the national association
384
for AD (HUAB) which is located in Zagreb, Croatian capital, there are only a couple
385
of local AD associations and 16 respondents (22.5%) do not know if there is a local
386
AD association in their community or not.387
4.4. Library training388
When it comes to library staff competencies, in majority of the study sample
389
libraries not a single one librarian was trained for work with AD patients and their
390
CGs (
n=
55, 77.5%). Five respondents (7.0%) claimed that their librarians follow
391
professional literature on that topic, one (1.4%) indicated that librarians from their
392
library participate in conferences on that topic. One (1.4%) respondent reported that393
the librarians are familiar with library materials on that topic.394
4.5. Library space395
Since improvement of physical environment has been identified internationally as
396
one of the key priorities in building dementia-friendly communities, it does not come
397
as a surprise that library spaces of studied libraries only partially meet the needs of
398
users with dementia. Findings show that library spaces best meet the requirements
399
regarding navigation, flooring, lighting, and noise level (Table 8).400
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14 S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
Table 8
Library physical space
Statement Mean
Easy navigation 4.3
Floors are neither shiny nor slippery 4.2
Library space is well lit 4.1
Noise level is controlled in user areas 4.1
Library space does not change often (e.g., furniture, location of user services, etc.) 3.9
Simple library signage 3.8
Aisles (e.g., between shelves or rooms) are wide enough without any obstacles 3.7
Library entrance is visible, without any obstacles or glass and shiny/reflective surfaces 3.6
Library possesses a gender neutral/family toilet 2.1
5. Discussion401
This paper presents findings from a national study into library services tailored
402
for the needs of the AD patients and their CGs in Croatia. To our knowledge this is
403
one of the first such studies both in Croatia and internationally. The response-rate of
404
36.4% speaks for the fact that public libraries in Croatia, in general, very rarely offer
405
services for this particularly vulnerable social group. This does not come as a surprise
406
because neither information, health or social care systems for AD patients and their
407
CGs in the country are sufficiently developed (Rušac, 2016; Petr Balog et al., 2020)
408
Croatian librarians in most cases have no training for dealing or communication with
409
AD patients – only seven respondents (9.9%) claimed that their staff took part in some
410
type of continuous professional development activities in this area (such as reading
411
literature on this topic).412
The highest number of respondents to the survey came from the smallest libraries413
(employing between zero to 1 professional librarians –
n=
32, 45.1%) catering to
414
the smallest communities (up to 5,000 inhabitants –
n=
26, 36.6%) with the user
415
populations of up to 1,000 library members (
n
40, 56.3%). It must be pointed out that
416
such small libraries, lacking library professionals, very rarely have enough resources
417
to develop services for any special types of users.418
The majority of our respondents have had no close encounters with the disease –
419
only 23 (32.3%) knew somebody who had the disease (either a friend, a neighbor
420
or a family member). However, a slightly higher percentage of respondents (49.3%)
421
are afraid of AD – indicating that people are familiar with the AD and its severity,
422
even if they do not know anybody who has it. In fact, it is the third ranking disease
423
when it comes to fear – respondents are more afraid only of cancer or stroke, which is
424
understandable since those diseases occur statistically more often than AD.425
In general, our respondents seem to be fairly knowledgeable about AD and do
426
not hold any stigmatizing opinions about people with AD. Only 20% or respondents
427
believes that AD patients receive appropriate level of care (health, social, etc.) in
428
Croatian society, which is consistent with the professional literature (Rušac, 2016)
429
and even fewer believe that majority of AD patients are in institutional care. The
430
latter is true for the situation worldwide (Novais et al., 2017), but it is particularly
431
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 15
true for Croatian society that severely lacks nursing homes and support services for
432
dementia patients (Petr Balog et al, 2020). However, it comes as surprise that almost
433
10% of respondents (
n=
5, 7.0%) thought that AD patients cannot enjoy reading due
434
to declining cognitive competencies. This basic misunderstanding of reading and AD
435
patients may prevent them from being open to developing library services for this
436
user group. In our study, however, two out of those five libraries shared that they have
437
organized activities for AD patients and their CGs.438
The respondents exhibited a high level of agreement with general ideas that public
439
libraries are important for the life-quality, self-efficacy or social inclusion of AD
440
patients. The majority believed that AD patients and particularly those in early stages
441
of the disease without significant intellectual difficulties should have access to library
442
services (mean 4.8), and that appropriate library services can contribute to the quality
443
of their life (mean 4.5), which is consistent with other sources (Howarth, 2020;
444
IGARD, n.d.). Interestingly, the respondents agreed only to a slightly lesser degree
445
with the statement that their library offered appropriate materials and services for
446
this user group (mean 3.9). This relatively high level of agreement certainly comes
447
as a surprise because findings show that very few of those libraries in practice offer
448
adapted materials or services tailored specially to AD patients. Although libraries
449
reported that they have various materials that AD patients or their CGs could use,
450
when it comes to programming for AD patients only 15 (21.1%) libraries in our
451
sample indeed organize services tailored for them.452
Our study findings further show that usually the bigger libraries that operate in
453
larger communities and employ several librarians offer AD-related services. In some
454
cases, even the smallest libraries, employing only one librarian, offered at least one
455
service (e.g., delivery of materials to people’s homes), but those cases were truly
456
rare. It is understandable that those activities and services require additional effort,
457
more staff and resources (as was the case with two public libraries in the sample that
458
offered as many as six various activities, programs and services), but it is also true
459
that many large libraries do not, at the moment, offer services for disabled patrons
460
(and particularly not for AD patients and their CGs). Libraries that offer services for
461
AD patients usually celebrate World Alzheimer’s Day or Month, deliver materials
462
to people’s homes, or simply provide space for various, AD related, activities and
463
meetings organized by some collaborating organization.464
Physical spaces of studied libraries are somewhat adopted for use by the AD
465
patients – libraries have easy navigation (mean 4.3), their floors are safe (mean 4.2),466
they are well lit (mean 4.1), and the noise level is controlled (mean 4.1). However,
467
problematic areas include – frequent rearrangement of furniture (mean 3.9), poor
468
signage (mean 3.8), obstacle-free passages and aisles (mean 3.7), and reflective
469
library entrances (mean 3.6). The pressing problem area is the family toilet, which
470
can accommodate both the AD patient and their CGs, that seem to be lacking in many
471
libraries in our study (mean 2.1).472
Libraries that provide services to AD patients and their CGs face many challenges.
473
Most frequently respondents indicated difficulties with learning about AD patients in
474
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16 S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities?
their community and reaching out to them. The data from our research imply that the
475
smaller the library community, the more familiar the librarians are with it. However,
476
every fifth bigger library in the sample not only knew their community well but it
477
also created activities and services for AD patients and their CGs - something that
478
smaller libraries did not offer. Respondents also feel inadequately skilled to deal with
479
AD patients and feel that they need additional training. The other, less prominent
480
challenges include: insufficient resources, too few potential users (AD patients) and
481
their lack of interest for library services, libraries’ numerous other obligations and
482
activities, and lack of appropriate written materials in Croatian as well as relevant
483
non-book materials.484
6. Conclusion485
The purpose of this national study was to understand how Croatian public libraries
486
serve the needs of AD patients and their CGs. Authors found out that public librarians
487
in Croatia, the participants in our study, are knowledgeable about AD (RQ1) and
488
believe that libraries can contribute to the development of dementia-friendly com-
489
munities (RQ2). However, findings also suggest that the largest portion of studied
490
libraries do not actively seek information about AD patients in their community and491
offer limited resources, services, and activities for this user group. About 75% of
492
respondents reported that they did not have AD patients among their membership,
493
which should not be surprising because designing services and programs for AD
494
patients involves substantial resources. Furthermore, although one respondent empha-
495
sized (in an open-ended comment) that libraries need to analyze their users regularly
496
in order to establish if they have any users with special needs, this practice seems to be
497
best described by a comment provided by another respondent: “We do not offer any
498
library services to people with AD or their family members, because they never asked
499
for them.” (RQ3). Libraries should however be aware that they need to actively seek500
potential (and underserved) users, especially if they are coming from a stigmatized
501
and marginalized community group.502
On the other hand, findings indicate that larger portion of studied libraries have
503
dementia-related materials for the general public and CGs of persons with AD. In the
504
words of one respondent: “When it comes to dementia-related services, my library
505
provides access to materials about the disease, which are intended for the members of
506
the family. We believe that literature can help them to accept that the person they love
507
has this disease and understand the changes they are going through.” Dementia-related
508
materials are very important because such library resources can contribute to public
509
education and awareness raising, and ultimately lead to decrease of CGs burden and510
removal of social stigma related with dementia.511
Our study also established that Croatian librarians do not possess required compe-
512
tencies to deal with their users with AD and that they need additional training about
513
AD and dementia in general to develop collections and services responsive to the
514
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S. Faletar Tanackovi´c et al. / How can libraries support dementia friendly communities? 17
needs and interests of AD patients and their CGs (RQ4). As a result of this finding,
515
dementia-related topics will be included in the LIS curriculum at the Department of
516
Information Sciences in Osijek and continuous professional development course on
517
this topic will be proposed to Croatian Centre for Continuous Education of Librarians.
518
The findings indicate that there may be a difference between the library approaches
519
to AD services in relation to their size and community (RQ6). Bigger libraries,
520
catering to bigger populations and employing more professional librarians tend to be
521
more inclined to offer services for AD patients and their CGs, although respondents
522
from smaller libraries seem to know their community better. While the respondents in
523
this study believed that libraries could support health and wellbeing of AD patients
524
and their CGs (RQ2), the study revealed that very often AD patients remain hidden
525
and consequently underserved members of library communities. Although library
526
physical spaces seem to be fit for use by the disabled people to a certain degree, there
527
is a lot of room for improvement (RQ5).528
One of the largest limitations of this study, a relatively low response rate, is an
529
interesting finding in itself. Authors believe that it suggests that dementia-friendly
530
services i.e., meaningful information, cultural, educational, and therapeutical activities
531
and opportunities for enjoyment of AD patients and their CGs are low on the agenda
532
of Croatian public libraries. This is probably because they have to make every-
533
day decisions about what services to offer and what user groups to target with the
534
limited human and financial resources. Also, little attention to dementia-related library
535
services is given in current LIS curricula, and this topic is non-existent in national
536
professional development program for librarians. Thus, the lack of interest in services
537
to AD patients and CGs could be result of librarians’ limited knowledge about these
538
users. Furthermore, as Alzheimer’s disease is still rather stigmatized in Croatian
539
society, AD patients and their CGs tend to avoid public places and engagement with
540
services, such as libraries, where they could be seen.541
Since AD, and dementia in general, has been recognized as an international health
542
priority, authors hope this study will encourage scholars to undertake similar studies
543
internationally, enabling libraries from across the world to share their evidence-based
544
best practices in library programing for AD patients and their CGs. Libraries should545
understand that they can make their communities supportive to people living with AD
546
not only by engaging them in library activities that help them remain independent,
547
active and engaged as long as possible but also by building public understanding and
548
knowledge about AD. What could be a better place to raise public awareness and
549
remove the social stigma, one of the largest challenges connected with AD, then in
550
our community libraries?551
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... Moreover, they thought that public libraries can play an important role in developing dementia-friendly communities by improving the quality of life of persons with dementia and their family members, and by contributing to public awareness about dementia and the removal of the social stigma connected to it. Similar results were obtained in a study among Croatian librarians, who did not see themselves as an integral part of the care team for dementia yet believed that public libraries should provide quality services for people with dementia and their family members (Faletar Tanacković et al., 2021). ...
... A recent study has shown that 45% of Croatian citizens believe that dementia is a mental illness and part of the normal ageing process (HUAB, 2018). Although librarians worldwide are increasingly serving this vulnerable and growing user group, libraries in Croatia currently do not offer any dementia programmes on a regular basis (Faletar Tanacković et al., 2021). ...
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