Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review Shiells, K., Pivodic, L., Holmerova, I., & Van den Block, L. (2019). Self-reported needs and experiences of people with dementia in nursing homes: a scoping review. Aging and Mental Health. https://doi.org/10.1080/13607863.2019.1625303 Publisher's PDF, also known as Version of record License (if available): CC BY-NC-ND Link to published version (if available): 10.1080/13607863.2019.1625303 Link to publication record in Explore Bristol Research PDF-document This is the final published version of the article (version of record). It first appeared online via Taylor and Francis at https://www.tandfonline.com/doi/full/10.1080/13607863.2019.1625303. Please refer to any applicable terms of use of the publisher. University of Bristol - Explore Bristol Research General rights This document is made available in accordance with publisher policies. 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Full terms of use are available: http://www.bristol.ac.uk/red/research-policy/pure/user-guides/ebr-terms/ https://doi.org/10.1080/13607863.2019.1625303 https://doi.org/10.1080/13607863.2019.1625303 https://research-information.bris.ac.uk/en/publications/c1c15c01-33fb-4c79-b2dc-0cf42d1259b9 https://research-information.bris.ac.uk/en/publications/c1c15c01-33fb-4c79-b2dc-0cf42d1259b9 Full Terms & Conditions of access and use can be found at https://www.tandfonline.com/action/journalInformation?journalCode=camh20 Aging & Mental Health ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: https://www.tandfonline.com/loi/camh20 Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review Kate Shiells, Lara Pivodic, Iva Holmerová & Lieve Van den Block To cite this article: Kate Shiells, Lara Pivodic, Iva Holmerová & Lieve Van den Block (2019): Self- reported needs and experiences of people with dementia living in nursing homes: a scoping review, Aging & Mental Health, DOI: 10.1080/13607863.2019.1625303 To link to this article: https://doi.org/10.1080/13607863.2019.1625303 © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group Published online: 04 Jun 2019. Submit your article to this journal Article views: 881 View Crossmark data https://www.tandfonline.com/action/journalInformation?journalCode=camh20 https://www.tandfonline.com/loi/camh20 https://www.tandfonline.com/action/showCitFormats?doi=10.1080/13607863.2019.1625303 https://doi.org/10.1080/13607863.2019.1625303 https://www.tandfonline.com/action/authorSubmission?journalCode=camh20&show=instructions https://www.tandfonline.com/action/authorSubmission?journalCode=camh20&show=instructions http://crossmark.crossref.org/dialog/?doi=10.1080/13607863.2019.1625303&domain=pdf&date_stamp=2019-06-04 http://crossmark.crossref.org/dialog/?doi=10.1080/13607863.2019.1625303&domain=pdf&date_stamp=2019-06-04 Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review Kate Shiellsa , Lara Pivodicb, Iva Holmerov�aa and Lieve Van den Blockb aCentre of Expertise in Longevity and Long-term Care, Faculty of Humanities, Charles University, Prague, Czech Republic; bEnd-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium ABSTRACT Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have fre- quently been shown to be unreliable. Therefore, this literature review aims to explore the self- reported needs and experiences of people with dementia in nursing homes. Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences. Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate envir- onment, meaningful relationships, support with grief and loss, end-of-life care. Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribu- tion towards guiding evidence-based practice that is tailored to the needs of nursing home resi- dents with dementia. ARTICLE HISTORY Received 22 December 2018 Accepted 19 May 2019 KEYWORDS Dementia; experiences; long-term care; nursing home; subjective needs Introduction Historically, people with dementia, and specifically those living in nursing homes, have been excluded from partici- pation in research (Davies et al., 2014). Exclusion from research can be linked with the dominance of the biomed- ical model and an emphasis on developing pharmaco- logical treatments for dementia. Consequently, researchers have frequently pursued a positivist-based paradigm of research, with participants playing a passive role in clinical trials (Bond & Corner, 2001). Furthermore, involving people with dementia in qualitative research has commonly been disregarded because of the association of dementia with ‘dwindling personhood’ (Moore & Hollett, 2003), and the view that associated communication and memory prob- lems may affect an individual’s ability to share their experi- ences (Nygård, 2006). In recent years, research into the needs and experiences of people with dementia living in nursing homes has been recognised as an increasingly valuable field (Milne, 2011). In the United Kingdom, approximately 70% of people living in nursing homes have dementia, which is often in the moder- ate to severe stages (Prince et al., 2014). Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms of dementia (Cohen-Mansfield, Dakheel-Ali, Marx, Thein, & Regier, 2015), higher levels of depression (Hancock, Woods, Challis, & Orrell, 2006), and reduced quality of life (Hoe, Hancock, Livingston, & Orrell, 2006). However, research in this field has frequently relied on reports from family mem- bers and staff, despite evidence to suggest that proxy accounts are not always reliable (Crespo, Bernaldo de Quir�os, G�omez, & Hornillos, 2012; Orrell et al., 2008). Therefore, elicit- ing the voice of people with dementia in research aimed at exploring their needs is essential for the production of evi- dence-based guidelines for care delivery in nursing homes, paving the way for improved quality of life amongst people with dementia (Sabat, 2003). Although literature reviews exploring the self-reported needs of people with dementia have been carried out, these have focussed on those living in the community (Van der Roest et al., 2007; Von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012). One review by Cadieux, Garcia, and Patrick (2013) looked at the needs of people with dementia in long-term care, using both proxy and subject- ive accounts. Their search included quantitative and quali- tative studies published between 2000 and 2010. However, their search string did not include specific terms to identify subjective accounts, and consequently, some articles exploring subjective needs and experiences may have been overlooked. The aim of this scoping review therefore, is to CONTACT Kate Shiells kate.shiells@fhs.cuni.cz � 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc- nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. AGING & MENTAL HEALTH https://doi.org/10.1080/13607863.2019.1625303 http://crossmark.crossref.org/dialog/?doi=10.1080/13607863.2019.1625303&domain=pdf&date_stamp=2019-06-04 http://orcid.org/0000-0002-4188-9454 http://orcid.org/0000-0003-2375-4174 http://creativecommons.org/licenses/by-nc-nd/4.0/ http://creativecommons.org/licenses/by-nc-nd/4.0/ https://doi.org/10.1080/13607863.2019.1625303 http://www.tandfonline.com explore the self-reported needs and experiences of people with dementia in nursing homes. Method Scoping review methodology Due to the broad nature of the research question and the lack of current research in this area, the scoping review was selected as the appropriate methodology for this study (Peters et al., 2015). A scoping review has been described as a form of ‘knowledge synthesis’ and involves examining the nature and extent of research activity, which is import- ant for determining gaps in the literature and directing future research (Colquhoun et al., 2014). For the purposes of this review, the six-stage framework as described by Arksey and O’Malley (2005) and adapted by Levac, Colquhoun, and O’Brien (2010) has been used to guide the process. Search strategy Search strings were discussed amongst the authors (K.S & L.P) and with a librarian. They were then organised accord- ing to the PICOS model for constructing search strings for mixed-methods reviews (Methley, Campbell, Chew-Graham, McNally, & Cheraghi-Sohi, 2014). The databases PubMed and PsycINFO were used in the search, which took place during February and March 2018. The search was initially narrowed to include articles published between January 2000 and February 2018 in English, French or Czech, which resulted in a total of 1158 articles. Table 1 shows the exact search string used for each database and the number of articles found. Inclusion and exclusion criteria The inclusion and exclusion criteria were initially decided upon by the authors (K.S & L.P) and reviewed during the search process by all authors. Articles of both quantitative and qualitative study designs exploring the self-reported needs and/or experiences of people with a diagnosis of any type of dementia living in a long-term care facility, such as a nursing home or residential home, were included. Those only involving participants with dementia living at home or in hospital were rejected, as well as studies involv- ing only participants with mild cognitive impairment (MCI) or probable dementia. Studies where participants already had a confirmed diagnosis of dementia were included, as well as those where researchers assessed cognitive impair- ment using an appropriate test. Those studies using only proxy accounts or observational methods were not included, as these did not seek to obtain views of people with dementia themselves. Finally, conference reports, edi- torials, books, protocols and dissertations were rejected. The screening process was carried out in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Liberati et al., 2009), as shown in Figure 1. Critical appraisal Critical appraisal in mixed methods reviews is currently a developing area. The Mixed Methods Appraisal Tool (MMAT) (Pace et al., 2012) was used as a general guide to assess the quality of articles of all study designs and to exclude any articles with fatal flaws. No studies were con- sidered to warrant exclusion on this basis alone. Data analysis A convergent qualitative synthesis was carried out, ena- bling the transformation of both quantitative and qualita- tive data into qualitative findings (Pluye & Hong, 2014). In order to transform data, thematic synthesis as described by Thomas and Harden (2008) was used. This involved firstly coding data inductively, according to both the category of needs and the category of experiences. For instance, a number of participants made reference to being bored and to repetitive days, and these topics formed initial codes under the category of experiences. In the second step, similar codes were merged into sub-themes wherever pos- sible. In this case, codes were categorised into the sub- theme ‘boredom and monotony’. The same process was undertaken according to the category of needs. The final stage of thematic synthesis requires the devel- opment of ‘analytical themes’, which address the research question directly. In this example, two authors (K.S & L.P) discussed, developed and sorted sub-themes to form the overarching analytical theme ‘activities’. Wherever possible, Table 1. Exact search strings used for each database and number of articles found. Database Search terms Records identified PubMed (“Nursing Homes”[Mesh] OR “Residential Facilities”[Mesh] OR “Long-Term Care”[Mesh] OR “Nursing Home�”[Title/Abstract] OR “Residential Facilities”[Title/Abstract] OR “Long-Term Care”[Title/Abstract]) AND (“Dementia”[Mesh] OR “Dementia”[Title/Abstract] OR “People with Dementia”[Title/Abstract]) AND (“Self Report”[Mesh] OR “Self Report�”[All Fields] OR “Subjective”[All Fields] OR “Surveys and Questionnaires”[Mesh] OR “Survey�” OR “Questionnaire�”[All Fields] OR “Trial” [All Fields] OR “Interviews”[All Fields] OR “Phenomenological”[All Fields] OR “Qualitative Research”[Mesh]) AND (“Experience�”[All Fields] OR “Health Services Needs and Demand”[Mesh] OR “Quality of Life”[Mesh] OR “Quality of Life”[All Fields] OR “Care Needs”[All Fields] OR “Wellbeing”[All Fields]) 750 PsycINFO (MJMAINSUBJECT.EXACT(“Nursing Homes”) OR MJMAINSUBJECT.EXACT(“Residential Care Institutions”) OR MJMAINSUBJECT.EXACT(“Long Term Care”) OR ab(“Nursing Home�”) OR ab(“Residential Facility”) OR ab(“Long Term Care”)) AND (MAINSUBJECT.EXACT.EXPLODE(“Dementia”) OR ab(“Dementia”) OR ab(“People with Dementia”)) AND (MAINSUBJECT.EXACT.EXPLODE(“Self-Report”) OR “Self Report�” OR “Subjective” OR MJMAINSUBJECT.EXACT(“Surveys”) OR MAINSUBJECT.EXACT(“Questionnaires”) OR “Survey�” OR “Questionnaire�” OR MJMAINSUBJECT.EXACT("Interviews") OR “Interview�” OR “Trial” OR “Phenomenological” OR MAINSUBJECT.EXACT.EXPLODE(“Qualitative Research”)) AND (MJMAINSUBJECT.EXACT(“Experiences (Events)”) OR MJMAINSUBJECT.EXACT(“Health Service Needs”) OR “Care Need�” OR MAINSUBJECT.EXACT.EXPLODE(“Quality of Life”) OR “Quality of Life” OR MAINSUBJECT.EXACT.EXPLODE(“Well Being”) OR “Well Being”) 408 Total number of records 1158 2 K. SHIELLS ET AL. direct quotes from participants were used for data analysis, rather than the authors’ interpretation of what participants had said (Van Leeuwen et al., 2019). Results Study characteristics A total of 41 studies were included in the final synthesis. The most commonly stated aims were to explore partici- pants’: experiences (n ¼ 14); quality of life (n ¼ 10); per- spectives (n ¼ 5); perceptions (n ¼ 4); preferences (n ¼ 3); needs (n ¼ 3); views (n ¼ 3); self-report (n ¼ 2); wellbeing (n ¼ 1); priorities (n ¼ 1); requirements (n ¼ 1); and feelings (n ¼ 1). Twenty-eight studies used a qualitative design, eight studies used a quantitative design, and five studies used mixed methods. Of the qualitative studies, the majority used interviews (n ¼ 27), including semi-struc- tured and unstructured or conversational interviews, and one study used focus groups. Of the quantitative studies, five were randomised controlled trials. A number of stud- ies used various methods to collect additional data, including: proxy interviews or focus groups with family or staff (n ¼ 15); observations (n ¼ 12); proxy scale ratings or questionnaires completed by family or staff (n ¼ 5); and data from medical notes (n ¼ 7). A small number of stud- ies (n ¼ 4) used stimulus materials, such as photos, sym- bols or Talking Mats to aid participants’ communication during interviews. Finally, details about participants’ type of dementia were only described in a small number of studies (n ¼ 10), whilst severity of dementia was more commonly described (n ¼ 33), with approximately half of studies specifying that they included people with severe dementia (n ¼ 20). In Table 2, we provide a summary of the individual studies. Themes Eight themes resulted from thematic synthesis: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care. Table 3 shows the sub-themes according to both experiences and needs for each of the eight analytical themes. Activities One of the most commonly occurring experiences of resi- dents with dementia was boredom, with synonymous expressions such as ‘monotonous’ days (Harmer & Orrell, 2008) and ‘lack of stimulation’ (Aggarwal et al., 2003) also conveyed. The effects of boredom were spoken about by one resident who said: ‘I get bored here [ … ] I feel like throwing something at them’ (Clare, Rowlands, Bruce, Surr, & Downs, 2008). Participants discussed a number of unstructured activities they enjoyed, such as crosswords, playing instruments, jigsaws, reading and knitting (Harmer & Orrell, 2008; Jonas-Simpson & Mitchell, 2005; Murphy, Tester, Hubbard, Downs, & MacDonald, 2005). However, many participants wished for ‘more social interaction’ (Popham & Orrell, 2012), and said that they take part in Articles identified through database search n=1158 Articles identified through reference lists n=34 Articles after duplicates removed n=973 Abstracts screened n=468 Articles excluded n=303 Full-text articles assessed n=165 Full-text articles excluded n=124 Reasons: -Only observations or proxy accounts used (n=68) -Not focusing on needs/experiences (n=33) -Not possible to separate relevant data (n=12) -Did not include people with dementia (n=6) -Data collection did not take place in a nursing home (n=5) Articles included in thematic synthesis n=41 Figure 1. Search flowchart in accordance with PRISMA guidelines. AGING & MENTAL HEALTH 3 Ta b le 2. Su m m ar y of ar ti cl es us ed in th em at ic sy n th es is . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es A g g ar w al et al . (2 00 3) U K To ex p lo re h ow p eo p le w it h d em en ti a an d th ei r re la ti ve s ex p er ie n ce d em en ti a an d to fin d ou t h ow th ey p er ce iv e an d re ce iv e ca re p ro vi si on . Q ua lit at iv e Re si d en ti al ca re se tt in g s (n um b er un kn ow n ). Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s us in g st im ul us m at er ia ls su ch as p h ot os an d ex p re ss io n ca rd s. 17 re si d en ts at va ri ou s st ag es of A lz h ei m er ’s d is ea se . -A ct iv it ie s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss Ba rt le tt (2 00 7) U K To ex p lo re h ow m en w it h d em en ti a ex p er ie n ce , an d d ea l w it h , n ur si n g h om e lif e. Q ua lit at iv e Sp ec ia lis t d em en ti a ca re w in g of a n ur si n g h om e. Ph en om en ol og ic al ca se st ud y w it h an un st ru ct ur ed in te rv ie w . ‘M r Br ow n ’-a re si d en t w it h A lz h ei m er ’s D is ea se . -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s Ba ue r et al . (2 01 3) A us tr al ia To ex p lo re re si d en ts ’ p er ce p ti on s of th e n ee d s an d b ar ri er s to th e ex p re ss io n of se xu al it y in lo n g - te rm ca re . Q ua lit at iv e Si x lo n g -t er m ca re fa ci lit ie s, in cl ud in g h ig h , lo w an d m ix ed ca re fa ci lit ie s. N at ur al is ti c in q ui ry w it h se m i- st ru ct ur ed in te rv ie w s. Fi ve re si d en ts w it h a d ia g n os is of d em en ti a in it s ea rl y st ag es . -M ea n in g fu l re la ti on sh ip s C ah ill an d D ia z- Po n ce (2 01 1) Ir el an d To as ce rt ai n if si m ila ri ti es or d iff er en ce s ex is t in p er ce p ti on s of q ua lit y of lif e am on g st n ur si n g h om e re si d en ts w it h d iff er en t le ve ls of co g n it iv e im p ai rm en t. Q ua lit at iv e Th re e n ur si n g h om es . Ex p lo ra to ry /d es cr ip ti ve st ud y us in g in -d ep th , se m i- st ru ct ur ed in te rv ie w s. 61 re si d en ts w it h a m ea n M M SE sc or e of 12 .6 . -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss C as ey et al . (2 01 6) A us tr al ia To d es cr ib e n ur si n g h om e re si d en ts ’ p er ce p ti on s of th ei r fr ie n d sh ip n et w or ks us in g so ci al n et w or k an al ys is , an d to co n tr ib ut e to th eo ry re g ar d in g re si d en t fr ie n d sh ip sc h em a, n et w or k st ru ct ur e, an d co n n ec ti on s b et w ee n n et w or k ti es an d so ci al su p p or t. M ix ed m et h od s D em en ti a Sp ec ifi c U n it in on e n ur si n g h om e. So ci al n et w or k an al ys is (S N A ) m et h od s: (i) re si d en t se lf- re p or t st ru ct ur ed in te rv ie w s w it h op en q ue st io n s w h er e re se ar ch er s al so sh ow ed p ar ti ci p an ts p h ot os of co - re si d en ts to id en ti fy fr ie n d s; (ii ) se lf- re p or ts on n on fa m ily ob je ct iv e so ci al su p p or t us in g th e Lu b b en So ci al N et w or k Sc al e- 6 (L SN S- 6) Fr ie n d sh ip s Su b -s ca le ; (ii i) su b je ct iv e re p or ts of so ci al is ol at io n m ea su re d w it h Th e Fr ie n d sh ip Sc al e. 30 re si d en ts w it h m ild to se ve re d em en ti a, ac co rd in g to th e G lo b al D et er io ra ti on Sc al e (G D S) . -M ea n in g fu l re la ti on sh ip s C h un g et al . (2 01 6) U SA To ex p lo re d em en ti a p at ie n ts ’ ex p er ie n ce s of a m ed ia p re se n ta ti on in cl ud in g im ag es of n at ur e. M ix ed m et h od s O n e lo n g -t er m n ur si n g fa ci lit y. Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s ex p lo ri n g p ar ti ci p an ts ’ vi ew s on a D V D se t of n at ur e sc en es . 23 p ar ti ci p an ts w it h a d ia g n os is of m ild -s ev er e d em en ti a b as ed on th e D ia g n os ti c an d St at is ti ca l M an ua l of M en ta l D is or d er s (D SM -I V ). -A ct iv it ie s -R em in is ce n ce C la re et al . (2 00 8) U K To ex p lo re th e su b je ct iv e ex p er ie n ce of lif e w it h d em en ti a in re si d en ti al ca re fr om th e p er sp ec ti ve of th e p er so n w it h d em en ti a, an d to un d er st an d th e p sy ch ol og ic al im p ac t of b ei n g in th is si tu at io n . Q ua lit at iv e Te n ca re h om es , sp ec ia lis ed fo r p eo p le w it h d em en ti a or m ix ed n ee d s. Ex p lo ra to ry st ud y w it h in te rp re ta ti ve p h en om en ol og ic al an al ys is of 28 3 un st ru ct ur ed co n ve rs at io n s b et w ee n re se ar ch er s an d p eo p le w it h d em en ti a. D at a fr om 71 re si d en ts w it h a m ea n M M SE of 10 .5 4 w as in cl ud ed in an al ys is . -A ct iv it ie s -R em in is ce n ce -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss C oh en -M an sf ie ld et al . (2 00 0) Is ra el To ex p lo re th e ro le -i d en ti ty of re si d en ts w it h d em en ti a, an d th e p ot en ti al fo r ut ili si n g th ei r en d ur in g se n se of se lf- id en ti ty fo r en h an ci n g th ei r q ua lit y of lif e. Q ua n ti ta ti ve Tw o n ur si n g h om es . Ex p lo ra to ry st ud y us in g cl os e- en d ed q ue st io n n ai re s. 26 re si d en ts w it h va ri ou s ty p es of d em en ti a at th e m ild -s ev er e st ag e. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t C on ra d ss on et al . (2 01 0) Sw ed en To ev al ua te th e ef fe ct s of a h ig h - in te n si ty fu n ct io n al ex er ci se p ro g ra m m e on d ep re ss iv e Q ua n ti ta ti ve N in e re si d en ti al ca re fa ci lit ie s, fo ur of w h ic h C lu st er -r an d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts ei th er re ce iv ed th e in te rv en ti on in th e fo rm of a 10 0 re si d en ts w it h m ild -m od er at e d em en ti a ac co rd in g to th e M M SE . -A ct iv it ie s (c on ti nu ed ) 4 K. SHIELLS ET AL. Ta b le 2. C on ti n ue d . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es sy m p to m s an d p sy ch ol og ic al w el lb ei n g am on g ol d er p eo p le d ep en d en t in ac ti vi ti es of d ai ly liv in g an d liv in g in re si d en ti al ca re fa ci lit ie s. h ad un it s fo r p eo p le w it h d em en ti a. h ig h -i n te n si ty fu n ct io n al w ei g h t- b ea ri n g ex er ci se p ro g ra m m e (n ¼ 47 ), or a p ro g ra m m e of ac ti vi ti es p er fo rm ed w h ils t si tt in g in th e co n tr ol g ro up (n ¼ 53 ). O ut co m e m ea su re s: d ep re ss iv e sy m p to m s, m ea su re d b y th e G er ia tr ic D ep re ss io n Sc al e 15 -i te m ve rs io n (G D S- 15 ), an d p sy ch ol og ic al w el lb ei n g , m ea su re d b y th e Ph ila d el p h ia G er ia tr ic C en te r M or al e Sc al e (P G C M S) . C oo ke et al . (2 01 0) A us tr al ia To in ve st ig at e th e ef fe ct of liv e m us ic on q ua lit y of lif e an d d ep re ss io n am on g st ol d er p eo p le w it h d em en ti a. Q ua n ti ta ti ve Tw o ag ed ca re fa ci lit ie s p ro vi d in g h ig h an d lo w ca re . Ra n d om is ed co n tr ol le d cr os s- ov er tr ia l. Pa rt ic ip an ts re ce iv ed th e liv e m us ic in te rv en ti on (n ¼ 23 ; at cr os s- ov er n ¼ 16 ) or at te n d ed a re ad in g g ro up if in th e co n tr ol g ro up (n ¼ 21 ; at cr os s- ov er n ¼ 15 ). O ut co m e m ea su re s: se lf- re p or te d q ua lit y of lif e, m ea su re d b y th e D em en ti a Q ua lit y of Li fe (D Q O L) q ue st io n n ai re , an d d ep re ss io n , m ea su re d w it h th e G er ia tr ic D ep re ss io n Sc al e (G D S) . 47 re si d en ts w it h a d ia g n os is of ea rl y- m id st ag e d em en ti a or p ro b ab le d em en ti a ac co rd in g to th e M M SE or D SM -I V , an d a d oc um en te d h is to ry of ag it at io n or ag g re ss io n w it h in th e la st m on th . M ea n M M SE sc or e w as 16 .5 1. -A ct iv it ie s C oo n ey et al . (2 01 4) Ir el an d To un d er st an d p eo p le w it h d em en ti a, st af f an d re la ti ve s’ p er sp ec ti ve s on re m in is ce n ce , it s im p ac t on th ei r liv es an d ex p er ie n ce of ca re an d ca re g iv in g . Q ua lit at iv e Fo ur lo n g -t er m ca re se tt in g s. G ro un d ed th eo ry st ud y us in g un st ru ct ur ed co n ve rs at io n s w it h re si d en ts . El ev en re si d en ts w it h a m ea n M M SE sc or e of 14 .9 . -R em in is ce n ce -M ea n in g fu l re la ti on sh ip s D e Bo er et al . (2 01 7) N et h er la n d s To co m p ar e q ua lit y of ca re , q ua lit y of lif e an d re la te d ou tc om es in g re en ca re fa rm s, re g ul ar sm al l- sc al e liv in g fa ci lit ie s an d tr ad it io n al n ur si n g h om es fo r p eo p le w it h d em en ti a. Q ua n ti ta ti ve Th re e ty p es of n ur si n g h om es : g re en ca re fa rm s (n ¼ 5) ; re g ul ar sm al l- sc al e liv in g fa ci lit ie s (n ¼ 9) ; tr ad it io n al n ur si n g h om es (n ¼ 4) . C ro ss -s ec ti on al d es ig n w it h d at a co lle ct ed on se lf- re p or te d q ua lit y of lif e us in g th e Q ua lit y of Li fe - A lz h ei m er ’s D is ea se Sc al e (Q oL -A D ). 11 5 re si d en ts w it h a fo rm al d ia g n os is of d em en ti a an d a m ea n S- M M SE sc or e of 8. 4. -A p p ro p ri at e en vi ro n m en t D oy le et al . (2 01 5) U SA To ex p lo re th e n ot io n of g en er at iv it y am on g el d er s w it h d em en ti a liv in g in lo n g -t er m ca re se tt in g s Q ua lit at iv e O n e lo n g -t er m ca re d em en ti a re si d en ce . Et h n og ra p h ic st ud y us in g fo rm al in te rv ie w s w it h re si d en ts . Th re e re si d en ts : -D an ie l- d ia g n os is of Le w y Bo d ie s d em en ti a, M M SE 11 . -S am an th a- d ia g n os is of m od er at e, n on -s p ec ifi c d em en ti a, M M SE 9. -D on n a- d ia g n os is of se ve re ea rl y on se t d em en ti a, M M SE 18 . -M ai n ta in in g p re vi ou s ro le s -M ea n in g fu l re la ti on sh ip s D r€ o es et al . (2 00 6) N et h er la n d s To ex p lo re to w h at d eg re e d oe s w h at p eo p le w it h d em en ti a in n ur si n g h om es an d m ee ti n g ce n tr es co n si d er im p or ta n t to th ei r q ua lit y of lif e co rr es p on d w it h h ow th ei r ca re rs fe el ab ou t w h at is im p or ta n t fo r th e q ua lit y Q ua lit at iv e Fo ur w ar d s in th re e n ur si n g h om es . Ex p lo ra to ry st ud y w it h in te rv ie w s w it h re si d en ts . 37 re si d en ts w it h m ild to m od er at el y se ve re d em en ti a, ac co rd in g to th e G D S. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss (c on ti nu ed ) AGING & MENTAL HEALTH 5 Ta b le 2. C on ti n ue d . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es of lif e of th e p eo p le w it h d em en ti a th ey ta ke ca re of . G eo rg e an d H ou se r (2 01 4) U SA To ex p lo re th e su b je ct iv e ex p er ie n ce of re si d en ts an d st af f of a sk ill ed - n ur si n g d em en ti a sp ec ia l ca re un it w h o p ar ti ci p at ed in Ti m eS lip s. Q ua lit at iv e O n e sk ill ed -n ur si n g d em en ti a sp ec ia l ca re un it in a co n ti n ui n g ca re re ti re m en t co m m un it y. Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s w it h re si d en ts d ur in g th e fin al w ee k of th e Ti m eS lip s in te rv en ti on . Te n re si d en ts w it h a d ia g n os is of d em en ti a at th e m od er at e- se ve re st ag e an d a m ea n M M SE sc or e of 6. 1. -A ct iv it ie s G od w in an d Po la n d (2 01 5) U K To ex am in e th e se lf- ex p er ie n ce of p eo p le w it h m od er at e to ad va n ce d d em en ti a. Q ua lit at iv e Th re e lo n g -t er m re si d en ti al or n ur si n g ca re h om es . In te rp re ta ti ve p h en om en ol og ic al an al ys is ap p ro ac h us in g se m i- st ru ct ur ed em p at h et ic in te rv ie w s. Te n re si d en ts w it h va ry in g d ia g n os es of d em en ti a, al l at m od er at e to ea rl y st ag es of ad va n ce d d em en ti a. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -S up p or t w it h g ri ef & lo ss G oo d m an et al . (2 01 3) U K To ex p lo re h ow ol d er p eo p le w it h d em en ti a d is cu ss th ei r p ri or it ie s an d p re fe re n ce s fo r en d -o f- lif e ca re . Q ua lit at iv e Si x ca re h om es . Ex p lo ra to ry st ud y us in g se m i- st ru ct ur ed , co n ve rs at io n al in te rv ie w s. 18 re si d en ts w it h d em en ti a, as re co rd ed in th ei r ca re n ot es . -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss -E n d -o f- lif e ca re G ra n eh ei m an d Ja n ss on (2 00 6) Sw ed en To ill um in at e th e m ea n in g of liv in g w it h d em en ti a an d d is tu rb in g b eh av io ur , as n ar ra te d b y th re e p er so n s ad m it te d to a re si d en ti al h om e. Q ua lit at iv e Re si d en ti al h om e fo r p eo p le w it h d em en ti a an d co m p lic at io n s th at m ai n ly ta ke th e fo rm of d is tu rb in g b eh av io ur . In te rp re ta ti ve h er m en eu ti c an d p h en om en ol og ic al an al ys is ap p ro ac h w it h co n ve rs at io n al in te rv ie w s w it h ea ch re si d en t. Th re e re si d en ts : -J oh n -d ia g n os is of va sc ul ar d em en ti a, M M SE 20 . -A n n ie -d ia g n os is of A lz h ei m er ’s d is ea se , M M SE 16 . -P h ili p -d ia g n os is of A lz h ei m er ’s d is ea se , M M SE 20 . A ll th re e al so ex p er ie n ce d d is tu rb in g b eh av io ur . -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss G uz m � an -G ar c� ı a et al . (2 01 3) U K To in ve st ig at e th e ef fe ct of in tr od uc in g a d an ce -b as ed p sy ch om ot or in te rv en ti on us in g D an z� o n (L at in b al lr oo m ) fo r p eo p le w it h d em en ti a in ca re h om es . Q ua lit at iv e Tw o ca re h om es . Pi lo t st ud y us in g g ro un d ed th eo ry m et h od ol og y. In te rv ie w s w er e ca rr ie d ou t tw ic e w it h re si d en ts af te r si x w ee ks of at te n d in g th e D an z� o n In te rv en ti on Se ve n re si d en ts d ia g n os ed w it h va ry in g ty p es of m ild -s ev er e d em en ti a, w it h a m ea n M M SE sc or e of 11 .7 1 -A ct iv it ie s H ar m er an d O rr el l (2 00 8) U K To ex p lo re co n ce p ts of m ea n in g fu l ac ti vi ty , as d ef in ed b y ol d er p eo p le w it h d em en ti a liv in g in ca re h om es , st af f an d fa m ily ca re rs . Q ua lit at iv e Tw o h om es p ro vi d in g tr ad it io n al re si d en ti al ca re an d on e h om e p ro vi d in g d em en ti a re si d en ti al ca re . Ex p lo ra to ry st ud y w it h th re e fo cu s g ro up s w it h p ar ti ci p an ts w it h d em en ti a us in g p ic tu re s of d iff er en t ac ti vi ti es to fa ci lit at e d is cu ss io n . 17 in d iv id ua ls w it h a m ild -s ev er e d ia g n os is of d em en ti a as d ef in ed b y th e D ia g n os ti c an d St at is ti ca l M an ua l of M en ta l D is or d er s (D SM ), an d w it h a m ea n M M SE sc or e of 12 . -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -R em in is ce n ce -M ea n in g fu l re la ti on sh ip s H as la m et al . (2 01 0) U K To in ve st ig at e th e im p ac t of g ro up re m in is ce n ce (G R) an d in d iv id ua l re m in is ce n ce (IR ) ac ti vi ti es on ol d er ad ul ts liv in g in ca re se tt in g s. Q ua n ti ta ti ve Sp ec ia lis ed un it s fo r p eo p le w it h d em en ti a in 9 re si d en ti al ca re h om es . Ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts w er e as si g n ed to on e of th re e in te rv en ti on s: g ro up re m in is ce n ce , in d iv id ua l re m in is ce n ce , or a g ro up co n tr ol ac ti vi ty (s ki tt le s) . O ut co m e m ea su re s: H os p it al A n xi et y an d D ep re ss io n sc al e (H A D S) , Q ua lit y of Li fe in A lz h ei m er ’s D is ea se sc al e (Q oL - A D ), Li fe Im p ro ve m en t sc al e, an d Q ua lit y of Li fe C h an g e sc al e. 40 re si d en ts fr om sp ec ia lis ed un it s w it h a g en er al m ed ic al d ia g n os is of d em en ti a. -R em in is ce n ce H eg g es ta d et al . (2 01 3) N or w ay To in ve st ig at e h ow lif e in N or w eg ia n n ur si n g h om es m ay af fe ct Q ua lit at iv e A sp ec ia l ca re un it fo r p eo p le w it h d em en ti a Fi ve re si d en ts w it h a d ia g n os is of d em en ti a at va ri ou s st ag es . -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t (c on ti nu ed ) 6 K. SHIELLS ET AL. Ta b le 2. C on ti n ue d . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es ex p er ie n ce s of d ig n it y am on g p er so n s w it h d em en ti a. in on e n ur si n g h om e, an d a g en er al un it in a se co n d n ur si n g h om e. In te rp re ta ti ve h er m en eu ti ca l an d p h en om en ol og ic al ap p ro ac h us in g fo rm al in te rv ie w s. -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss Jo n as -S im p so n an d M it ch el l (2 00 5) C an ad a To g iv e vo ic e to ex p re ss io n s of q ua lit y of lif e fo r p er so n s w h o liv e w it h d em en ti a an d w h o re si d e in lo n g -t er m ca re , p ri m ar ily on lo ck ed co g n it iv e su p p or t un it s. Q ua lit at iv e Lo ck ed co g n it iv e su p p or t un it s an d on e p h ys ic al su p p or t un it in a lo n g - te rm ca re fa ci lit y. D es cr ip ti ve st ud y us in g se m i- st ru ct ur ed in te rv ie w s co n d uc te d al on g si d e a m us ic or ar t th er ap is t. M us ic an d ar t w as of fe re d to p ar ti ci p an ts as m ed iu m s to fu rt h er d es cr ib e th ei r q ua lit y of lif e. 16 p ar ti ci p an ts fr om th e lo ck ed su p p or t un it s, an d on e p ar ti ci p an t fr om th e p h ys ic al su p p or t un it , al l d ia g n os ed w it h va ry in g ty p es of d em en ti a w it h m ild - se ve re im p ai rm en t. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss Ka uf m an n an d En g el (2 01 6) G er m an y To ex am in e To m Ki tw oo d ’s m od el of p sy ch ol og ic al n ee d s an d w el l- b ei n g in d em en ti a b as ed on th e se lf- re p or t of in d iv id ua ls w it h m od er at e or se ve re d em en ti a, an d to d iff er en ti at e an d el ab or at e th is m od el in th e lig h t of th e em p ir ic al q ua lit at iv e d at a. Q ua lit at iv e Lo n g -t er m ca re un it fo r p eo p le w it h m od er at e or se ve re d em en ti a. D ed uc ti ve -i n d uc ti ve d es ig n us in g se m i- st ru ct ur ed in te rv ie w s w it h q ue st io n s b as ed on To m Ki tw oo d ’s m od el of n ee d s. 19 re si d en ts w it h m ild -s ev er e d em en ti a an d an av er ag e M M SE sc or e of 9. 41 . -A ct iv it ie s -R em in is ce n ce -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss M ilt e et al . (2 01 6) A us tr al ia To d es cr ib e th e m ea n in g of q ua lit y re si d en ti al ca re fr om th e p er sp ec ti ve of p eo p le w it h co g n it iv e im p ai rm en t an d th ei r fa m ily m em b er s. Q ua lit at iv e 3 re si d en ti al ag ed ca re fa ci lit ie s. D es cr ip ti ve st ud y w it h in -d ep th , se m i- st ru ct ur ed in te rv ie w s. 12 re si d en ts w it h m ild -s ev er e co g n it iv e im p ai rm en t. Th e m ea n n um b er of er ro rs on th e Sh or t Po rt ab le M en ta l St at us Q ue st io n n ai re (S PM SQ ) fo r p ar ti ci p an ts w as 7. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s M jø ru d et al . (2 01 7) N or w ay To in ve st ig at e th e p er so n al ex p er ie n ce of liv in g in a n ur si n g h om e ov er ti m e fr om th e p er sp ec ti ve of th e p er so n w it h d em en ti a an d to le ar n w h at m ak es lif e b et te r or w or se in th e n ur si n g h om e. Q ua lit at iv e Tw o sp ec ia l ca re un it s fo r p eo p le w it h d em en ti a an d 2 re g ul ar un it s ac ro ss 3 n ur si n g h om es . In te rp re ta ti ve p h en om en ol og ic al h er m en eu ti c ap p ro ac h w it h un st ru ct ur ed in te rv ie w s. 12 re si d en ts w it h m ild to se ve re d em en ti a ac co rd in g to th e cl in ic al d em en ti a ra ti n g sc al e (C D R) . -A ct iv it ie s -R em in is ce n ce -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss M on ro e et al . (2 01 4) U SA To d et er m in e if a d ia g n os is of d em en ti a in flu en ce d p ai n se lf- re p or ts an d p ai n m ed ic at io n us e in a g ro up of ve rb al ly co m m un ic at iv e n ur si n g h om e re si d en ts . Q ua n ti ta ti ve Lo n g -s ta y b ed s in on e n ur si n g h om e. C om p ar at iv e st ud y us in g th e se ve n q ue st io n st ru ct ur ed p ai n in te rv ie w d er iv ed fr om th e G er ia tr ic Pa in M ea su re co m p ar in g ou tc om es in re si d en ts w it h an d w it h ou t d em en ti a. 45 p ar ti ci p an ts co m p le te d th e in te rv ie w . 19 w it h a d ia g n os is of m ild -m od er at e d em en ti a, an d 26 w it h ou t d em en ti a. A ll p ar ti ci p an ts h ad a m in im um of on e p ai n -r el at ed d ia g n os is . -E n d -o f- lif e ca re M oy le et al . (2 01 1) A us tr al ia To un d er st an d th e fa ct or s th at in flu en ce q ua lit y of lif e fo r p eo p le liv in g w it h d em en ti a in lo n g -t er m ca re , in cl ud in g an un d er st an d in g of h ow th ey p er ce iv ed th ey w er e va lu ed . Q ua lit at iv e Fo ur lo n g -t er m ca re fa ci lit ie s p ro vi d in g lo w an d h ig h ca re , as w el l as d em en ti a- sp ec ifi c ca re . Pr ag m at ic , ex p lo ra to ry ap p ro ac h w it h se m i- st ru ct ur ed in te rv ie w s. 32 re si d en ts w it h a d em en ti a d ia g n os is ac co rd in g to th e M M SE an d D SM . -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s M oy le et al . (2 01 5) A us tr al ia To d es cr ib e q ua lit y of lif e as re p or te d b y p eo p le liv in g w it h d em en ti a in lo n g -t er m ca re in te rm s of in flu en ce rs of , as w el l as th e st ra te g ie s n ee d ed , to im p ro ve q ua lit y of lif e. Q ua lit at iv e Fo ur ag ed ca re fa ci lit ie s. D es cr ip ti ve , ex p lo ra to ry d es ig n w it h a ca se st ud y ap p ro ac h an d st ru ct ur ed in te rv ie w s. 12 re si d en ts w it h a d ia g n os is of va ry in g ty p es of d em en ti a, w it h M M SE sc or es in th e ra n g e of 16 - 24 in d ic at in g m ild to m od er at e d em en ti a. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss M ul q ue en an d C of fe y (2 01 7) Ir el an d To ex p lo re th e p re fe re n ce s of re si d en ts w it h d em en ti a fo r th ei r en d of lif e ca re , an d n ur se s’ p er ce p ti on s of th es e p re fe re n ce s. M ix ed m et h od s O n e re si d en ti al ca re fa ci lit y. N om in al g ro up te ch n iq ue w it h g ro up d is cu ss io n an d ra n ki n g of p re fe re n ce s. N om in al g ro up of si x re si d en ts w it h m ild d em en ti a an d an M M SE sc or e of 18 or ov er . -E n d -o f- lif e- ca re (c on ti nu ed ) AGING & MENTAL HEALTH 7 Ta b le 2. C on ti n ue d . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es M ur p h y et al . (2 00 5) U K To ob ta in th e vi ew s of fr ai l ol d er p eo p le w it h co m m un ic at io n im p ai rm en ts us in g an in n ov at iv e in te rv ie w in g m et h od s, Ta lk in g M at sT M . Q ua lit at iv e C ar e h om es (n um b er un kn ow n ) Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s us in g th e Ta lk in g M at s vi su al fr am ew or k. Se ve n ol d er p eo p le w it h co m m un ic at io n d iff ic ul ti es an d a d ia g n os is of d em en ti a. -A ct iv it ie s -R em in is ce n ce -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s O ls en et al . (2 01 5) N or w ay To ex p lo re th e p os it iv e an d n eg at iv e ex p er ie n ce s of a h ig h -i n te n si ty fu n ct io n al ex er ci se p ro g ra m in n ur si n g h om e re si d en ts w it h d em en ti a, fr om th e p er sp ec ti ve of th e re si d en ts . Q ua lit at iv e O n e n ur si n g h om e. Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s. Ei g h t re si d en ts w it h m ild to m od er at e d em en ti a, ac co rd in g to th e C D R. -A ct iv it ie s -F re ed om an d ch oi ce Po p h am an d O rr el l (2 01 2) U K To d et er m in e to w h at ex te n t th e ca re h om e en vi ro n m en t m et th e re q ui re m en ts of re si d en ts w it h d em en ti a in th e co n te xt of th e vi ew s of m an ag er s, fa m ily ca re rs an d st af f, an d a st an d ar d en vi ro n m en ta l as se ss m en t. M ix ed m et h od s O n e la rg e ca re h om e w it h re si d en ti al , n ur si n g an d sp ec ia lis ed d em en ti a ca re ; th re e n ur si n g h om es , tw o of w h ic h h ad sp ec ia lis ed d em en ti a b ed s; an d on e re si d en ti al h om e w it h n o sp ec ia lis ed p ro vi si on . Ex p lo ra to ry , ev al ua ti ve st ud y w it h fiv e fo cu s g ro up s w it h re si d en ts us in g op en -e n d ed q ue st io n s. Tw en ty -f iv e p ar ti ci p an ts w it h a d ia g n os is of d em en ti a at th e m ild - se ve re st ag e an d a m ea n M M SE sc or e of 8. 8. -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s Po w er s an d W at so n (2 01 1) U SA To ob ta in an un d er st an d in g of re si d en ts ’ sp ir it ua l or ie n ta ti on s, p ra ct ic es an d p re fe re n ce s; to ex am in e fa m ily m em b er an d N H st af f p er ce p ti on s of sp ir it ua l n ur tu ra n ce an d su p p or t fo r re si d en ts ; an d to an al ys e in st it ut io n al re so ur ce s fo r an d ap p ro ac h es to as se ss in g an d m ee ti n g re si d en ts ’ sp ir it ua l n ee d s. M ix ed m et h od s Th re e n ur si n g h om es p ro vi d in g ca re fo r p eo p le of al l re lig io us fa it h s, b ut w it h m ai n ly th e fo llo w in g fa it h - b as ed af fil ia ti on s: C at h ol ic , Je w is h , an d Pr ot es ta n t. C on cu rr en t n es te d st ra te g y in w h ic h th e p re d om in an t m et h od w as q ua lit at iv e se m i- st ru ct ur ed in te rv ie w s. 47 re si d en ts w it h m ild -s ev er e d em en ti a ac co rd in g to th e C og n it iv e Pe rf or m an ce Sc al e (C PS ). -A ct iv it ie s -S up p or t w it h g ri ef an d lo ss Se rr an i A zc ur ra (2 01 2) A rg en ti n a To in ve st ig at e w h et h er a sp ec ifi c re m in is ce n ce p ro g ra m m e is as so ci at ed w it h h ig h er le ve ls of q ua lit y of lif e in n ur si n g h om e re si d en ts w it h d em en ti a. Q ua n ti ta ti ve Tw o n ur si n g h om es . Si n g le -b lin d ed , p ar al le l- g ro up s ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts in th e in te rv en ti on g ro up re ce iv ed th e re m in is ce n ce th er ap y; an ac ti ve co n tr ol g ro up w h er e p ar ti ci p an ts re ce iv ed co un se lli n g an d in fo rm al so ci al co n ta ct ; an d a p as si ve co n tr ol g ro up w h er e p ar ti ci p an ts re ce iv ed un st ru ct ur ed so ci al co n ta ct . O ut co m e m ea su re s: Q ua lit y of lif e m ea su re d b y th e Se lf Re p or te d Q ua lit y of Li fe Sc al e (S RQ oL ). 13 5 re si d en ts d ia g n os ed w it h A lz h ei m er ’s D is ea se ac co rd in g to th e D SM -I V , w it h a m ea n M M SE sc or e of 13 .9 . -R em in is ce n ce Ta k et al . (2 01 5) U SA To d es cr ib e ty p es of cu rr en t ac ti vi ty in vo lv em en t an d b ar ri er s to ac ti vi ti es re p or te d b y n ur si n g h om e re si d en ts w it h d em en ti a. Q ua lit at iv e N ur si n g h om es (n um b er un kn ow n ) Et h n og ra p h ic st ud y w it h se m i- st ru ct ur ed in te rv ie w s. 37 re si d en ts w it h a ra n g e of m ild - m od er at e d em en ti a an d a m ea n M M SE sc or e of 16 .4 . -A ct iv it ie s -M ai n ta in in g p re vi ou s ro le s -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s Ta n et al . (2 01 3) A us tr al ia To ex p lo re th e p er ce p ti on s an d ex p er ie n ce s of ag ed ca re re si d en ts w it h m ild d em en ti a on th e d ea th s of co -r es id en ts . Q ua lit at iv e Th re e ag ed ca re fa ci lit ie s, tw o of w h ic h p ro vi d in g lo w ca re , an d on e Ex p lo ra to ry st ud y w it h tw o ro un d s of se m i- st ru ct ur ed in te rv ie w s. 23 re si d en ts w it h m ild d em en ti a ac co rd in g to th e Ps yc h og er ia tr ic A ss es sm en t Sc al e (P A S) an d th e -S up p or t w it h g ri ef an d lo ss (c on ti nu ed ) 8 K. SHIELLS ET AL. Ta b le 2. C on ti n ue d . A ut h or /Y ea r/ C ou n tr y A im Re se ar ch ty p e N um b er & ty p e of fa ci lit y St ud y d es ig n & m et h od s St ud y p op ul at io n Th em es p ro vi d in g b ot h h ig h an d lo w ca re . C D R, an d w it h a m ea n M M SE sc or e of 22 . Th ei n et al . (2 01 1) U K To ex p lo re th e p er so n al ex p er ie n ce of p eo p le w it h d em en ti a of m ov in g in to a ca re h om e. Q ua lit at iv e O rd in ar y or sp ec ia lis t d em en ti a re si d en ti al an d n ur si n g h om es (n um b er un kn ow n ). Ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s w it h p ar ti ci p an ts b ef or e an d fiv e w ee ks af te r th ei r m ov e in to th e ca re h om e. 18 in d iv id ua ls w it h a d ia g n os is of d em en ti a in th e m od er at e st ag es . -F re ed om an d ch oi ce -M ea n in g fu l re la ti on sh ip s -S up p or t w it h g ri ef an d lo ss Tr av er s et al . (2 01 3) A us tr al ia To co n d uc t a ra n d om is ed co n tr ol le d tr ia l of d og -a ss is te d th er ap y fo r p eo p le w it h d em en ti a liv in g in ag ed ca re fa ci lit ie s us in g va lid at ed in st ru m en ts of m oo d , q ua lit y of lif e, an d p sy ch os oc ia l fu n ct io n in g . Q ua n ti ta ti ve Th re e re si d en ti al ag ed ca re fa ci lit ie s, al l ca ri n g fo r re si d en ts w it h h ig h an d lo w ca re n ee d s. A m ul ti ce n te r ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts w er e ra n d om ly as si g n ed to ei th er th e d og -a ss is te d th er ap y g ro up (n ¼ 27 ) or h um an -t h er ap is t (c on tr ol ) g ro up (n ¼ 28 ). O ut co m e m ea su re s: Q ua lit y of Li fe -A lz h ei m er ’s D is ea se q ue st io n n ai re (Q O L- A D ); th e M ed ic al O ut co m es St ud y 36 -I te m Sh or t Fo rm H ea lt h Su rv ey (S F- 36 ); an d th e G er ia tr ic D ep re ss io n Sc al e Sh or t Fo rm (G D S- SF ). 55 re si d en ts w it h a d ia g n os is of m ild -m od er at e d em en ti a, ac co rd in g to th e M od ifi ed M in i- M en ta l St at e Ex am (M SE -3 M S) , w it h a m ea n M SE -3 M S sc or e of 58 .1 in th e d og -a ss is te d th er ap y g ro up , an d 59 .8 in th e co n tr ol g ro up . -A ct iv it ie s V an Za d el h of f et al . (2 01 1) N et h er la n d s To in ve st ig at e ex p er ie n ce s of re si d en ts , th ei r fa m ily ca re g iv er s an d n ur si n g st af f in g ro up liv in g h om es fo r ol d er p eo p le w it h d em en ti a an d th ei r p er ce p ti on of th e ca re p ro ce ss . Q ua lit at iv e Tw o g ro up liv in g un it s lo ca te d on th e g ro un d s of a la rg e- sc al e n ur si n g h om e. N at ur al is ti c in q ui ry w it h se m i- st ru ct ur ed , in -d ep th in te rv ie w s. Fi ve re si d en ts w it h a d ia g n os is of d em en ti a ra n g in g fr om m od er at e to se ve re an d a m ea n M M SE sc or e of 10 . -M ai n ta in in g p re vi ou s ro le s -A p p ro p ri at e en vi ro n m en t W ie rs m a an d Pe d la r (2 00 8) C an ad a To ex am in e th e ex p er ie n ce s of ol d er ad ul ts w it h d em en ti a w h ile th ey w er e in lo n g -t er m ca re an d w h ile th ey w er e in in a su m m er - ca m p se tt in g . Q ua lit at iv e Lo ck ed co g n it iv e su p p or t un it s in on e lo n g -t er m ca re fa ci lit y an d on e su m m er ca m p se tt in g w it h ca b in s fo r 4- 6 re si d en ts an d 2- 3 st af f. Ex p lo ra to ry st ud y w it h co n ve rs at io n al in te rv ie w s at th re e d iff er en t p h as es : (i) d ur in g th e 3 m on th s p ri or to g oi n g to ca m p ; (ii ) d ur in g th e 4 d ay s of ca m p ; (ii i) d ur in g th e m on th af te r th e ca m p . Te n re si d en ts w it h d em en ti a, m os tl y W or ld W ar II ve te ra n s, se ve n of w h ic h p ar ti ci p at ed in al l th re e p h as es , an d th re e of w h ic h p ar ti ci p at ed in p h as e on e on ly . -F re ed om an d ch oi ce -A p p ro p ri at e en vi ro n m en t -M ea n in g fu l re la ti on sh ip s AGING & MENTAL HEALTH 9 activities as a way of socialising with others (Tak, Kedia, Tongumpun, & Hong, 2015). Preferred facilitated activities occurring in group settings included: music sessions (Mjørud, Engedal, Røsvik, & Kirkevold, 2017), dancing (Guzm�an-Garc�ıa, Mukaetova- Ladinska, & James, 2013; Tak et al., 2015), bingo (Cahill & Diaz-Ponce, 2011); pet therapy (Travers, Perkins, Rand, Bartlett, & Morton, 2013), and group storytelling (George & Houser, 2014). A reading group was shown to increase feelings of belonging (Cooke, Moyle, Shum, Harrison, & Murfield, 2010), and residents experienced improvements in wellbeing (Conradsson, Littbrand, Lindelh€of, Gustafson, & Rosendahl, 2010) and increased mobility, independence and self-esteem from regular exercise classes (Olsen, Wiken Telenius, Engedal, & Bergland, 2015). Practicing of religion was also linked with improved quality of life (Dr€oes et al., 2006; Powers & Watson, 2011), with residents wishing to attend church services (Mjørud et al., 2017; Moyle, Table 3. Specific experiences and needs according to each theme. Analytical Theme Experiences Sub-themes Needs Sub-themes Activities Boredom & monotony Isolation & loneliness Belonging Wellbeing Mobility & independence Quality of life Exclusion Unstructured activities e.g. crosswords, playing instruments, jigsaws, reading and knitting. Facilitated activities in group settings e.g. music sessions, bingo, dancing, group storytelling, pet therapy, reading group, regular exercise classes. Opportunities to attend religious ceremonies. Activities tailored to individual preferences and abilities. Maintaining previous roles Boredom & monotony Loss of identity Comfort Coping Feeling appreciated Purpose Opportunity to contribute to domestic tasks around the home. Opportunity to engage in altruistic activities within the home and in the wider society. Involvement in sharing ideas and knowledge. Reminiscence Boredom & monotony Quality of life Wellbeing Improved staff relationships Comfort Hope Empowerment Loss of identity Opportunities to share memories with others through photographs or newspaper clippings. Reminiscence sessions involving staff. Watching clips of familiar places. Freedom & choice Restriction Quality of life Frustration Disempowerment Lack of choice Loss of identity Listening to or playing music. Going home and attending family events. Support and freedom to access the garden. Control over daily routines. Choice over what to eat. Choice over which room to sit in. Facilities to prepare a drink/snack when hungry. Respect for individual preferences. Appropriate environment Isolation & loneliness Mobility & independence Confusion Ownership Privacy Living near family or in a familiar area. Good relationships with staff. Internal environment that does not increase risk of falls. Internal environment that is not confusing. Access to personal space. Key to room. Family photos in room. Opportunity to bring larger familiar items from home. Spaces encouraging interaction. Accessible external spaces & gardens. Meaningful relationships Comfort Isolation & loneliness Exclusion Restriction Frustration Abuse Loss of identity Anxiety Confusion Routines conducive to forming friendships. Positive relationships with staff. Spending time with family. Assistance to maintain relationships outside of the home. Reassurance of family visits. Staff acceptance of sexuality & intimacy. Support with grief & loss Coping Loss of identity Confusion Fear Loss of hope Isolation & loneliness Loss of purpose Mobility & independence Comfort Informed about the death of a fellow resident. Opportunity to attend funerals. Afternoon tea in memory of residents. Pre-move visit. Known person in the home to talk to. Religious or spiritual support. End-of-life care Comfort Pain Peaceful surroundings. Appropriate pain relief. Presence of family. Surrounded by familiar possessions. Effective communication. Familiar staff providing care. Appropriate environment according to wishes (hospital/home). Religious or spiritual support. 10 K. SHIELLS ET AL. Fetherstonhaugh, Greben, Beattie, & AusQoL Group, 2015), and take part in ‘life-long religious practices’ within the home (Tak et al., 2015). Activities should also be tailored to the individual (Moyle et al., 2015). Specific barriers to partaking in activ- ities included deterioration in hearing and sight, arthritis, and lack of staff, transport and space in the home (Moyle et al., 2015; Tak et al., 2015). For those residents at a more advanced stage of dementia, engaging in ‘simple pleas- ures’, such as having an ice cream and a chat were described as enjoyable activities (Cahill & Diaz- Ponce, 2011). Maintaining previous roles A number of participants from various studies described feeling sad about the loss of roles, as portrayed by the fol- lowing example: ‘I used to be a famous teacher, a psych- ologist, now I am nothing’ (Cohen-Mansfield, Golander, & Arnheim, 2000). Participants described feeling of ‘little value’ (Moyle et al., 2011), and many still had a desire to contribute to the home or society (Godwin & Poland, 2015; Jonas-Simpson & Mitchell, 2005). This could be achieved through engagement in domestic tasks such as tidying their rooms (Kaufmann & Engel, 2016). However, some par- ticipants were happy to be relieved of the responsibility of domestic tasks (Godwin & Poland, 2015; Van Zadelhoff, Verbeek, Widdershoven, Van Rossum, & Abma, 2011). Altruism was also important for some residents, provid- ing occupation, as well as comfort (Doyle, Rubinstein, & de Medeiros, 2015; Kaufmann & Engel, 2016). This may take place within the home, as explained by one participant, who said the best thing about her day was ‘chatting with other people, hearing their complaints and their worries and trying to give them a little advice’ (Moyle et al., 2015). This was echoed by other participants who said they cope better with their own situation by helping others (Clare et al., 2008). Residents also feel appreciated when staff asked for their knowledge about a subject (Graneheim & Jansson, 2006). Finally, one participant reported how being involved in altruistic activities benefitting the wider society, in this case crocheting baby clothes for hospitals, gave her ‘purpose in life’ (Tak et al., 2015). Reminiscence Reminiscence was described as a meaningful activity (Harmer & Orrell, 2008) and led to a sustained improve- ment in quality of life amongst participants in one trial (Serrani Azcurra, 2012), although these results were not replicated in a trial investigating reminiscence therapy and wellbeing (Haslam et al., 2010). Residents enjoy reminis- cence sessions that involve staff, as they feel they are tak- ing more of an interest in them, which in one study led to increased interaction during activities of daily living (Cooney et al., 2014). Residents also gain consolation from reflecting on things they have done in the past, which pro- vides hope that life may be like that again (Kaufmann & Engel, 2016). Furthermore, reminiscence provides a means to reflect on things they can still do (Clare et al., 2008). Tools for reminiscence included ‘photographs, record- ings and newspaper clippings’ and subsequent group dis- cussion (Serrani Azcurra, 2012). Films showing familiar places were enjoyed by some participants (Chung, Choi, & Kim, 2016). However, such reminders could bring back both happy and sad memories (Mjørud et al., 2017). In par- ticular, photographs may remind individuals of what they have lost (Murphy et al., 2005). Freedom and choice As with boredom, an experience of a restriction was com- mon. Residents described staff as ‘controlling’ (Moyle et al., 2011), and said that their quality of life would improve if they could do more of what they pleased (Dr€oes et al., 2006). When asked what they would like to do but were not allowed to, participants answered: music, going home, and attending family events (Cohen-Mansfield et al., 2000). Lack of freedom to leave the home was noted as a source of frustration across a number of articles (Cahill & Diaz- Ponce, 2011; Goodman, Amador, Elmore, Machen, & Mathie, 2013; Milte et al., 2016; Popham & Orrell, 2012), and being prevented from simply going for a walk in the garden was associated with lower ratings of quality of life (Dr€oes et al., 2006). World War II veterans living in locked cognitive support units in one nursing home described them as prison camps (Wiersma & Pedlar, 2008); an experi- ence echoed by a number of others residing in general nursing homes (Moyle et al., 2015; Olsen et al., 2015). However, in a home where the doors were not locked, one resident still felt restricted because staff did not have time to assist him to go outside (Heggestad, Nortvedt, & Slettebø, 2013). Several participants experienced a sense of disempower- ment (Moyle et al., 2011), and a lack of choice (Aggarwal et al., 2003) in other areas of their lives. Residents stated that they should have control over their daily routines and not have to fit in with ‘the status quo’ (Milte et al., 2016). This included choosing: what to eat (Aggarwal et al., 2003); whether to have a bath or shower (Murphy et al., 2005); which room to sit in (Popham & Orrell, 2012); and what time to go to bed (Jonas-Simpson & Mitchell, 2005). Residents would also like to prepare a drink or snack when they are hungry (Heggestad, Nortvedt, & Slettebø, 2013), with one participant suggesting that there should be a small kitchen in the home for their use (Popham & Orrell, 2012). Participants also wished to be respected as a person with individual preferences (Milte et al., 2016). For instance, in one study, although staff addressed almost all residents by their first name, only 70% of participants who expressed an opinion were happy with this (Cohen-Mansfield et al., 2000). Appropriate environment There were varied reports as to whether nursing homes were a homely environment. Reasons for feeling ‘at home’ included living near family or near where they used to live, and good relationships with staff. Those with mild demen- tia were more inclined to consider a nursing home homely compared to those at a more advanced stage (Cahill & Diaz-Ponce, 2011). Participants discussed several needs in relation to their built environment, including the need to navigate areas without risk of falls (Dr€oes et al., 2006) or confusion, particularly for those at advanced stages of dementia (Bartlett, 2007). Participants also appreciated AGING & MENTAL HEALTH 11 access to ‘personal space’ (Popham & Orrell, 2012), which promotes a sense of ownership (Moyle et al., 2015), and fulfils the need for time alone (Kaufmann & Engel, 2016). However, some residents lacked privacy and disliked that strangers could enter without permission (Dr€oes et al., 2006). As a result, some said they should be provided with a key (Milte et al., 2016; Heggestad, Nortvedt, & Slettebø, 2013). Within their rooms, family photos were important for combatting loneliness (Mjørud et al., 2017). When asked about other objects they would have liked to bring, partici- pants mentioned: furniture, carpet, and plants (Cohen- Mansfield et al., 2000). The type of home may also play an important role in meeting individuals’ needs, such as group living homes, which were found to encourage interaction (Van Zadelhoff et al., 2011). As regards to the outdoor environment, partic- ipants wished for accessible external spaces (Moyle et al., 2011) and gardens (Bartlett, 2007), which were found to be important in maintaining independence and ownership (Moyle et al., 2015). Green care farms were also explored. However, no statistically different quality of life scores were found when green care farms were compared with trad- itional nursing homes or small-scale living facilities (De Boer, Hamers, Zwakhalen, Tan, & Verbeek, 2017). Meaningful relationships A number of participants spoke about the importance of relationships, and gaining comfort through human contact (Kaufmann & Engel, 2016). Fear of loneliness was discussed, specifically amongst those residents with advanced demen- tia (Cahill & Diaz-Ponce, 2011; Mjørud et al., 2017). In one study, a male participant highlighted how as a man it was harder to make friends, partly because there were a lot more women in the home (Moyle et al., 2011). Furthermore, in one dementia specific unit, no residents reported having a friendship within their unit, compared with non-dementia specific units (Casey, Low, Jeon, & Brodaty, 2016). Participants frequently described frustra- tions with fellow residents, disliking how they shout or hurt others (Bartlett, 2007; Murphy et al., 2005; Wiersma & Pedlar, 2008). Some residents felt that routines kept in the home were not conducive to forming friendships, as most went to bed early (Moyle et al., 2011). As regards to relationships with staff, Cahill and Diaz- Ponce (2011) found that they are especially important for those with mild-moderate dementia. Some residents described positive relationships with staff (Mjørud et al., 2017). However, others described their relationships as ‘economic’ (Bartlett, 2007), and said that staff could be diffi- cult to find, manhandled them, and treated them like patients (Goodman et al., 2013; Milte et al., 2016). Relationships with family also continue to be significant (Dr€oes et al., 2006; Harmer & Orrell, 2008; Tak et al., 2015). Spending time with family provided opportunities for ‘meaningful conversations’, as well as reminding individuals about their existence outside of the care setting (Moyle et al., 2011). Losing contact with family was mentioned as a ‘key source of anxiety’ for residents, particularly when first moving into the home, and they may require staff to assist them to maintain contact (Milte et al., 2016), includ- ing through the use of Skype (Moyle et al., 2015). Participants felt that their families were not visiting them enough, which was particularly common amongst those at an advanced stage of dementia, who often wrongly believed family had not visited them when they had (Cahill & Diaz-Ponce, 2011). Finally, a small number of participants talked about how they missed intimacy (Bauer et al., 2013; Dr€oes et al., 2006). In one study, nursing homes were not considered to be conducive to expressions of sexuality, with residents fear- ing negative reactions from staff and gossip. Residents found talking to staff about sexual needs too personal, and viewed staff as ‘strangers’ (Bauer et al., 2013). Support with grief and loss Individuals residing in a nursing home are likely to experi- ence the loss of fellow residents. However, Tan, O’Connor, Howard, Workman, and O’Connor (2013) found that 70% of residents with mild dementia in their study were not con- cerned about being around people dying. Instead, they were unhappy about not being told about the death of a resident, and felt that all residents should be informed together. As regards to funerals, 40% of participants in this study indicated that they would have liked to have attended a funeral of a resident they were close to. Furthermore, participants appreciated the idea of an after- noon tea in memory of residents who had died. Residents may also experience loss in regards to their former lives and identities (Cahill & Diaz-Ponce, 2011; Mjørud et al., 2017). A number of participants expressed confusion and fear about why they were in the nursing home (Clare et al., 2008). Others wished to go home, with one participant describing how she had taken to walking down corridors so she would become strong enough to live with her daughter (Goodman et al., 2013). Other resi- dents disliked living in the home so much that they felt they had no future, with three residents in one study say- ing that they wished for their lives to end. Notably, two of these residents said that they had not been able to talk this way with anyone except the researcher (Goodman et al., 2013). However, Thein, D’Souza, and Sheehan (2011) found that most of the 18 participants they interviewed after their move liked their new homes, which was in part linked with having undertaken a pre-move visit, as well as having a ‘known person in the home’. Participants also described a ‘loss of function’, leading to a ‘loss of purpose’. For instance, a decline in physical inde- pendence led one resident to express: ‘I can’t help anybody else in here, what’s the point of it all’ (Goodman et al., 2013). Support for residents may be provided in the form of a pastor (Powers & Watson, 2011) or other ‘spiritual rit- uals’ (Kaufmann & Engel, 2016), which were identified as providing comfort during difficult times. End-of-life care Needs at the end of life were explored in two studies. Mulqueen and Coffey (2017) found that, amongst six par- ticipants with mild dementia, comfort and peace were ranked most important at this stage. Participants wished to be ‘pain free, worry free’ at the end of their lives, with ‘quiet and peaceful surroundings’. This included not being moved to hospital. Presence of family was ranked second in importance, followed by ‘my own things’, where 12 K. SHIELLS ET AL. participants said being in their own room surrounded by familiar items, such as family photos, would provide com- fort. Fourthly, residents highlighted the need for effective communication, hoping that staff would not withdraw from them. In particular, residents would like familiar staff to care for them. Goodman et al. (2013) qualitatively explored the prefer- ences of 18 residents with dementia for end-of-life care. There were mixed feelings regarding place of death, with one resident expressing preference for the nursing home. However, another said that she would prefer to go to hos- pital as she felt that there people ‘especially take an inter- est in your feelings’. As regards to religious needs, one resident said he would like to see a priest. Another partici- pant emphasised that she would prefer to talk to a particu- lar staff member about any concerns she may have, more so than her children, who she worried about upsetting. Residents with dementia may also have varying needs as regards to pain relief. Although it was not specified whether participants were receiving end-of-life care, Monroe et al. (2014) found that nursing home residents with dementia reported more intense levels of pain than those without dementia. However, participants were less likely to tell staff about pain, and less likely to report that nursing home staff asked about their pain. Discussion This scoping review provides new evidence concerning the needs and experiences of people with dementia in nursing homes, a previously underrepresented population in research. One of the most commonly occurring needs in the literature was the need for activities. However, partici- pants emphasised the need for activities that are tailored to their abilities and interests. This is a challenge for nurs- ing homes where often ‘personal preferences are con- strained by the needs of others’ (Bruce & Schweitzer, 2008). Obtaining a life history when an individual first moves into the home has been suggested to ensure all aspects of care are personalised. This should be followed by a thoughtful approach to replicating activities, in a way that evokes ‘the “feel” of an activity enjoyed in the past, without engender- ing any anxiety about performance’ (Bruce & Schweitzer, 2008). One particular activity explored in the literature was reminiscence. There was conflicting evidence regarding the impact of this activity on quality of life and wellbeing. Schweitzer and Bruce (2008) propose a ‘creative communi- cation-based approach’ to reminiscence, underpinned by a person-centred philosophy. For instance, this approach involves listening to individuals tell their stories in a respectful manner, and avoiding questioning information that may seem factually incorrect. The need for freedom was another common theme amongst participants in this review. In particular, low qual- ity of life ratings were linked with a lack of access to the outdoor environment. Although restricting access to the outdoor environment reduces risk from a staff perspective, it limits activities and prevents the ‘possibility of building relationships which might enhance the person’s life’ (Fossey, 2008). Furthermore, access to the outdoor environ- ment has been shown to have a number of health benefits for people with dementia, including reducing neuropsychi- atric symptoms (Heyn, Abreu, & Ottenbacher, 2004), restor- ing circadian rhythm, and increasing levels of vitamin D (Pollock & McMair, 2012), linked with a reduction in falls (Bischoff-Ferrari et al., 2009). One potential solution to this dilemma is to introduce ‘dementia-friendly outdoor envi- ronments’ (Mitchell & Burton, 2006). Preliminary recommen- dations for which include environments that are ‘familiar, legible, distinctive, accessible, comfortable and safe’ (Mitchell & Burton, 2006). For example, flat paving and regular seating intervals. Under the theme of ‘meaningful relationships’, frustra- tions with fellow residents, and staff were described, as well as a loss of contact with communities and families. These findings may suggest the need for a movement towards ‘relationship-centred care’, as explored by Nolan, Keady, and Aveyard (2001), who argue that relationships play an important role in determining quality of life, in par- ticular by maintaining ‘identity and personhood’ (Davies & Nolan, 2008). Participants also described feeling unable to talk to staff about sexual needs. In their study exploring the attitudes of nursing home staff, Ward, Vass, Aggarwal, Garfield, and Cybyk (2005) found that staff commonly avoid this topic during the assessment process as they find it ‘problematic’. The authors suggest that staff should be trained in how to broach this topic, and develop an under- standing of the way in which sexuality forms an important part of personhood. As regards to end-of-life care, only two studies in this review specifically addressed this area of need, and in both studies, there were mixed opinions amongst participants about the preferred place of death. This stresses the requirement for future wishes to be discussed, which may take the form of advance care planning (ACP), a process where patients determine their preferences for future care (Robinson et al., 2012). ACP has been shown to reduce inappropriate hospitalisations for people with dementia. However, the ACP process should be commenced in the early stages of dementia before loss of capacity (Robinson et al., 2012). Implications This study has shown that people with dementia in nursing homes, including those at a more advanced stage, are able to voice their experiences and needs, which has implica- tions for education, practice and policy in the domain of dementia care planning, provision and evaluation in this setting. Firstly, wherever possible, nursing homes should involve people with dementia in the planning of their care at all stages, including for end of life. Furthermore, the themes and sub-themes presented in this paper have pro- vided a possible evidence-based framework to guide nurs- ing homes in the process of person-centred assessment and care planning for people with dementia. Thirdly, peo- ple with dementia should be given the opportunity to con- tribute to the evaluation of their care. Future research This study has also provided a means to identify gaps in the literature and future research priorities. More research AGING & MENTAL HEALTH 13 addressing the needs of this population in relation to rem- iniscence, sexuality and intimacy, and end-of-life care is required. Furthermore, only one study specifically exploring the spiritual needs of people with dementia was identified. Spiritual needs have been found to be neglected in research, despite the role that spirituality has been shown to play in providing a source of comfort for people with dementia, and the way in which spiritual needs determine a range of other needs, such as end-of-life care (Higgins, 2013). Secondly, due to the broad nature of dementia, needs of individuals according to various types, as well as stages of the condition should be explored. Finally, as regards to methods used in the studies, observations and proxy accounts were commonly used to complement self-reports. Although it has been said that triangulation increases con- fidence in drawing conclusions from data in dementia research (Black & Rabins, 2007), the researcher should con- sider that different sources of data may actually introduce ‘different perspectives’ (Nygård, 2006). Table 2 provides a brief description of methods and additional tools used to collect data. However, a review exploring methods used to elicit the experiences and needs of people with dementia in more detail could provide a valuable source of informa- tion for researchers developing their own studies in this area. Limitations Only two databases were used to search for articles, hence some articles may have been missed, including grey litera- ture. Restriction to articles in English, French and Czech may also mean that results are more representative of a European or Western perspective. Conclusion With rates of dementia continuing to rise, the impetus on improving care for this population is growing. Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. A total of eight themes were identified across the articles used in this scop- ing review, providing evidence that people with dementia have a wide variety of needs which, as developed by Kitwood (1997), span significantly further than physical needs alone, to include psychosocial and environmental needs. However, this review is only a starting point towards guiding evidence-based practice, and has highlighted a number of gaps in the literature. In particular, further research is required to investigate needs according to the type and stage of dementia, as well as needs in relation to reminiscence, sexuality, spirituality, and end-of-life care for people with dementia in nursing homes. Acknowledgements With thanks to Katrien Alewaters, librarian at the Vrije Universiteit Brussel, and the End-of-Life Care Research Group, also at the Vrije Universiteit Brussel, for their input in designing the search string. Disclosure statement The authors report no conflict of interest. Funding The research presented in this paper was carried out as part of the Marie Curie Initial Training Network (ITN) action, H2020-MSCA-ITN- 2015, under grant agreement number 676265. L.P. is a Postdoctoral Fellow of the Research Foundation-Flanders. ORCID Kate Shiells http://orcid.org/0000-0002-4188-9454 Iva Holmerov�a http://orcid.org/0000-0003-2375-4174 References Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C., & Cybyk, B. (2003). People with dementia and their relatives: Personal experi- ences of Alzheimer’s and of the provision of care. Journal of Psychiatric and Mental Health Nursing, 10(2), 187–197. https://doi. org/10.1046/j.1365-2850.2003.00550.x. 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