- Email: [email protected]
Prevalence of dementia and organization of dementia care in Swiss disability care homes
Accepted Manuscript Prevalence of dementia and organization of dementia care in Swiss disability care homes Monika T. Wicki, Florian Riese PII:
S1936-6574(16)30083-8
DOI:
10.1016/j.dhjo.2016.05.008
Reference:
DHJO 499
To appear in:
Disability and Health Journal
Received Date: 18 October 2015 Revised Date:
19 April 2016
Accepted Date: 15 May 2016
Please cite this article as: Wicki MT, Riese F, Prevalence of dementia and organization of dementia care in Swiss disability care homes, Disability and Health Journal (2016), doi: 10.1016/j.dhjo.2016.05.008. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
1
ACCEPTED MANUSCRIPT Title Prevalence of dementia and organization of dementia care in Swiss disability care homes
Running title
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Dementia in disability care homes
Authors Monika T. Wicki1, Florian Riese2,3
University of Applied Sciences of Special Needs Education, Zurich, Switzerland
2
Division of Psychiatry Research and Psychogeriatric Medicine, University Hospital of
3
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Psychiatry Zurich, Zurich, Switzerland
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1
URPP Dynamics of Healthy Aging, University of Zurich, Zurich, Switzerland
Corresponding author: Monika T. Wicki
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University of Applied Sciences of Special Needs Education Schaffhauserstrasse 239 PO Box 5850 8050 Zurich
EP
[email protected] 0041 43 317 12 34
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The views expressed in the submitted article are our own and not an official position of the institution or funders.
Conflict of interest disclosure: The authors declare no conflict of interest.
Acknowledgments: The PALCAP study was funded by SNSF grant 406740_139324 / 1 as part of the NRP67 “End-of-Life” and the University of Applied Sciences of Special Needs Education, Zurich. FR was supported by SNSF NRP67 grant 406740_139363 and the SAMS/Bangerter-Rhyner-Foundation “Health Services Research” grant program.
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Keywords: aging, dementia, prevalence, intellectual disabilities, residential care, care
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organization
Previous presentation of abstracts at meetings regarding the research is acceptable but should be noted on the title page. For copyrighted and/or previously published material (including figures or tables) that is duplicated in the submission, written, signed
SC
permissions from the copyright holder must be uploaded at time of submission.The
Results were presented at the conference “Das dritte Drittel”, Schweizerische Epilepsie
M AN U
Klinik, Zürich, 24. September 2015. The abstract was accepted for presentation at the EAPC world congress in Dublin, 8.-11. June 2016. But no copyrighted and no previously published material is duplicated in the submission.
Word count: 1860
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Abstract word count: 240
Number of references: 23
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Number of tables and figures: 3
1
ACCEPTED MANUSCRIPT Title Prevalence of dementia and organization of dementia care in Swiss disability care homes
Running title
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Dementia in disability care homes
The views expressed in the submitted article are our own and not an official position of
SC
the institution or funders.
Conflict of interest disclosure: The authors declare no conflict of interest.
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Keywords: aging, dementia, prevalence, intellectual disability, residential care, care
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organization
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ACCEPTED MANUSCRIPT Abstract
Background: With higher life expectancy an increasing number of people with
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intellectual disability (PWID) are at risk for developing dementia.
Objective: Since PWID are an often neglected patient population, the objective of this study was to investigate the prevalence of dementia in residential disability homes in
SC
Switzerland and to describe how residential homes organise dementia care.
Methods: All residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. A subset of questions covered the
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number of residents with diagnosed and suspected dementia and the organisation of dementia care. The response rate to the dementia-related questions was 32% (n = 140 care homes with 10403 residents).
Results: In residential homes specialised in PWID, 5.8% of the residents were reported
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to have a diagnosed or suspected dementia. In 140 deaths of PWID, 26% (n = 37) died with a diagnosed or suspected dementia. Residential homes for PWID mostly rely on internal resources (67.7%), general practitioners (61.3%) or psychiatrists (45.2%) for the care of residents with dementia, while specialised dementia nurses are rarely
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involved (16.1%).
Conclusion: This is the first study in Switzerland to assess the prevalence of dementia in
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PWID. The study indicates a diagnostic gap. Dementia care is provided in a heterogeneous way across Swiss residential homes for people with disability. Since the number of PWID requiring such care will likely increase in the future, best practice examples and guidelines are needed.
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ACCEPTED MANUSCRIPT Introduction
Increasing longevity has been one of the most remarkable changes in people with intellectual disability (PWID) over the last decades. As life expectancy of PWID extends into older age, dementia is an increasing cause of morbidity and mortality. The
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prevalence of dementia in PWID is comparable with or even higher than in the general population [1–4]. Preexisting cognitive impairment may complicate the diagnosis of dementia
in
PWID
possibly
leading
to
underdiagnosis
and
consequently
mismanagement [4]. It is therefore of interest to characterize possible diagnostic and
SC
care provision gaps in order to provide a rationale for improvement of care.
In Switzerland – like in many other countries – the majority services for PWID have
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historically evolved not from the medical or nursing sector but from the social work and pedagogical sector [5]. In care homes for PWID, staff may mainly come from nonmedical, non-nursing background and may therefore lack the specific knowledge and skills for the new challenge which is dementia care, particularly in areas such as pain and symptom management [6]. In order to improve care competencies in these areas,
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knowledge transfer from non-ID dementia care seems to be a promising approach: a specialised prosthetic environment based on non-ID dementia care principles was found to contribute to maintenance of skills and activities in older PWID, likely by facilitating participation on an individual level and providing appropriate intellectual challenges [7,
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8]. Consensus recommendations for the evaluation and management of dementia in PWID have recently become available for the United States [9], but there is currently no specific guidance for Switzerland. Furthermore, dementia in PWID is not covered in
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detail in the Swiss dementia strategy [10], i. e. no specific diagnostic or therapeutic measures or service development aims are included in the strategy despite the approximately 27,000 PWID in Switzerland [11–13]. Again, this lack of consideration for the special needs of PWID with dementia may be at least partially explained by the historical development of disability care services outside the medical paradigm.
The purpose of our study is to broaden the necessary database for a discussion on care organisation for dementia in residential homes for PWID in Switzerland. The objectives of our study were to investigate for the first time the prevalence of dementia in residential homes for PWID in Switzerland and to explore the organisation of dementia
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care in these facilities. We hypothesized that dementia is currently underdiagnosed in Swiss PWID living in residential homes and that dementia care is fragmented due to the lack of specific guidelines and care pathways.
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Methods All residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. The list of residential homes was obtained from the national association for service providers for people with disabilities (INSOS
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Switzerland) and the IVSE (Intercantonal cooperation of social-medical organisations). The survey was distributed on paper to the directors of the residential homes from Oct. 2012 – Jan. 2013 and was available in German and French. The directors were asked to
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serve as informants on PWID living in their corresponding residential homes. In order to improve response rates, non-responding directors received a reminder phone call one month later. Questionnaires were returned to the investigators by mail. The survey was based on the questionnaires developed by D’Haene et al. [14] and Wagemans et al. [15] and is available from the corresponding author upon request. As previously published
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[16,17], the survey comprised two parts, one part focusing on written policies on palliative care and training in palliative care (40 questions), the other on people who died within the last five years, including demographic variables (26 questions). Regarding dementia, four questions investigated the prevalence and organisation of
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care: (1) number of residents and number of residents with diagnosed dementia at present time, (2) number of residents with suspected dementia at present time, (3)
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number of deaths and number of deaths with diagnosed or suspected dementia in the last five years and (4) organisation of dementia care. For the last question, directors could choose several answers from the following options: care in residential home by regular staff (use of internal resources), consultation with psychiatrists, neurologists, geriatricians, general practitioners, specialised nurses for people with dementia, change in accommodation such as transfer to nursing home, or other. Due to the type of study, the cantonal ethics committee Zurich, Switzerland, waived the necessity for ethics approval. Data from the paper questionnaires was entered into spreadsheet format manually and analyzed using SPSS version 21. Results are presented with descriptive
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statistics. Where appropriate, differences were analysed with Chi-square tests. P ≤ 0.05 was considered statistically significant. Results
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Residential home characteristics
The total response rate to the whole survey was 58% (N = 254 residential homes, i. e. their directors). The subset of dementia-related questions reported here were answered by 140 residential home directors (32%) covering 93 residential homes for PWID and
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47 for people with primarily sensory, physical or psychological impairment. Eightythree directors reported to have had at least one death among residents in their facility
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during the past five years. The mean age of all residents was 45.5 years (SD 9.1). 65% of the residential homes were smaller homes providing care for 1–49 people, 25% medium-sized homes providing care for 50–100 people and 65% larger homes providing care for more than 100 people. The smallest home provided care for six
Dementia prevalence
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people; the largest for 304 people.
In 2012, 7468 residents were living in the 93 residential homes for PWID, of which,
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141 residents had a diagnosis of dementia (1.8%). Residential home directors and caregivers suspected dementia for additional 305 (4%) of the residents (see table 2). The 47 residential homes for people with primarily sensory, physical or psychological
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impairment provide housing for 2935 residents. Of these, 51 residents (1.7%) had a diagnosed dementia and 55 residents (1.8%) had a suspected dementia (see table 2).
Insert Table 1 about here
Deaths with dementia
Eighty-three residential homes, where people had died within the last five years, provided detailed information on 239 deceased residents (140 with ID, 99 without ID).
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Of these, 7.9% had a diagnosed dementia. Dementia was suspected in a further 11.7% of deaths (see table 3).
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Insert Table 2 about here
Organisation of dementia care
People with dementia living in residential disability homes most frequently receive care
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by the regular staff, i. e. with internal resources (58.6%), or by general practitioners (55.0%) and psychiatrists (45.7%). In only 16.1% of the residential homes a specialised dementia nurse is asked for support in caring for residents with dementia. When
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diagnosed with dementia, in 17.1% of the residential homes residents are transferred to nursing homes (see table 4). Although the differences are small, more residential homes for PWID rely on internal staff and general practitioners than homes for people with other disabilities (χ2(1, N = 140) = 9.60, p < .05 and χ2(1, N = 140) = 4.43, p < .05,
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respectively).
Insert Table 3 about here
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In 53 of 82 residential homes (65%), in which care of persons with dementia is organised within the organisation, psychiatrists are regularly involved, and in 63 of 82 residential homes (77%) a physician is involved (28 of them do not involve a
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psychiatrist too).
Discussion
To our knowledge, this is the first Swiss study on prevalence of dementia and organisation of dementia care in the often medically underserved population of people with disabilities. We found a very low rate of diagnosed dementia in Swiss residential homes for disability care. In residential homes for PWID, about one quarter of deceased residents had either a diagnosed or suspected dementia. Dementia care in residential
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homes for PWID was mostly provided by internal staff and general practitioners. Except for psychiatrists, dementia specialists were rarely consulted.
Compared to previous studies on the prevalence of dementia in PWID in other countries (reviewed in [18]), the prevalence of diagnosed dementia was very low in our study
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(1.8%). Dementia was suspected in a higher number of PWID (4.0%), providing further evidence for a diagnostic gap in this population. As preexisting cognitive impairments can complicate the diagnosis of dementia in PWID, several instruments, e.g. [19–22] and assessment guidelines [9] have been developed in order to aid the diagnostic
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process. However, only few of these are available in German [23] and –in our experience– they are rarely used by non-specialists. Future policies and training activities should promote the use of such tools in order to narrow the diagnostic gap and
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consequently improve access to dementia care. At the level of residential homes, a higher level of formalized dementia diagnoses could stimulate the development and implementation of prosthetic environments suitable for PWID with dementia – which may help conserving residual skills and abilities [8]. Dementia was diagnosed or suspected in about one quarter of deaths that occurred in PWID. Due to the increasing
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longevity of PWID, it is likely that the need for dementia end-of-life care will further increase in the future. Staff training in palliative care as well as a focus on advance care planning may help preparing institutions and residents better for this trend.
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In terms of organisation of dementia care, our data indicates that the majority of residential facilities for PWID either rely on inhouse staff or general practitioners to provide care. Psychiatrists are the third group of care providers that play a major role.
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For future educational activities, these groups are therefore preferential targets. In contrast, specialised dementia nurses or geriatricians are consulted in only a minority of residential homes. This may – at least partially – reflect the challenges in collaboration between disability institutions and external specialists who are often not used to the communication needs of PWID. Surprisingly, PWID were transferred to nursing homes for dementia care in only about 16% of residential homes. If housing continuity is to be maintained at the current level, staff of residential homes will likely need more training in dementia and improved contact to specialist dementia care.
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The major limitation of this study is its retrospective design which favors recall bias. Diagnosed and suspected dementia in PWID were furthermore reported by directors of residential homes not by treating physicians. However, in our view both of these primary sources of bias rather work in favour of underestimating a possible diagnostic gap. As cross-sectional study, it does not allow us to draw definite conclusions about
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trends in prevalence or care organisation. Our study is furthermore limited by its response rate of only 32% to the dementia-related questions, which could at least partly be driven by the directors’ underestimation of the problem in their respective care
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homes.
In conclusion, our survey provides evidence for a diagnostic gap regarding dementia in persons with disabilities living in Swiss residential homes. We furthermore provide
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evidence for heterogeneity of dementia care among the facilities. Non-specialist care providers like inhouse staff and general practitioners shoulder the majority of dementia care in PWID. Their efforts should be supported by collecting best-practice examples, specific training and development of guidance policies. Future research should address which factors determine whether a PWID with dementia is transferred to a nursing
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dementia.
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home and which interventions are effective in stabilizing quality of life in PWID with
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References
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1. Sheehan R, Ali A, Hassiotis A. Dementia in intellectual disability. Current Opinion in Psychiatry. 2014;27(2):143-148. doi:10.1097/YCO.0000000000000032. 2. Sinai A, Bohnen I, Strydom A. Older adults with intellectual disability. Current Opinion in Psychiatry. 2012;25(5):359-364. 3. Strydom A, Chan T, King M, Hassiotis A, Livingston G. Incidence of dementia in older adults with intellectual disabilities (English). Res. dev. disabil. (Print). 2013;34(6):1881-1885. http://search.ebscohost.com/login.aspx?direct=true&db=fcs&AN=27335246&site=ehost-live. 4. Bishop KM, Hogan M, Janicki MP, et al. Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual & Developmental Disabilities. 2015;53(1):229. 5. Wolfisberg C. Heilpädagogik und Eugenik: zur Geschichte der Heilpädagogik in der deutschsprachigen Schweiz (1800-1950) (History of Special Needs Education in German speaking Switerzland). Zürich: Chronos; 2002. 6. Fahey-McCarthy E, McCarron M, Connaire K, McCallion P. Developing an education intervention for staff supporting persons with an intellectual disability and advanced dementia. Journal of Policy and Practice in Intellectual Disabilities. 2009;6(4):267-275. doi:10.1111/j.1741-1130.2009.00231.x. 7. DE VREESE, Luc P., MANTESSO U, BASTIANI E de, Weger E, Marangoni AC, GOMIERO T. Impact of dementia-derived nonpharmacological intervention procedures on cognition and behavior in older adults with intellectual disabilities: A 3-year follow-up study. Journal of Policy and Practice in Intellectual Disabilities. 2012;9(2):92-102. doi:10.1111/j.17411130.2012.00344.x. 8. de Vreese, L. P., Gomiero T, Uberti M, et al. Functional abilities and cognitive decline in adult and aging intellectual disabilities. Psychometric validation of an Italian version of the Alzheimer’s Functional Assessment Tool (AFAST): Analysis of its clinical significance with linear statistics and artificial neural networks. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH. 2015;59(4):370-384. 9. Moran JA, Rafii MS, Keller SM, Singh BK, Janicki MP. The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clin Proc. 2013;88(8):831-840. doi:10.1016/j.mayocp.2013.04.024. 10. FOPH. National dementia strategy 2014-2017. Bern: Federal Office of Public Health (FOPH) and Swiss Conference of the Cantonal Ministers of Public Health (CMPH); 2013. 11. Jecker-Parvex M, Breitenbach N. Tracking an Elusive Population: Family Carers of Older Adults With Intellectual Disabilities in Romandy (Switzerland). Journal of Policy & Practice in Intellectual Disabilities. 2012;9(3):175-184. 12. Gremaud G, Charrière E, Cappelli M. Concept d'accompagnement des personnes handicapées viellissantes: Situation et perspectives dans le canton de Fribourg. Schweizerische Zeitschrift für Heilpädagogik. 2009;15(2):17-23. 13. Bieri A, Stremlow J. Angebot und Angebotsstrukturen stationärer Betreuung der erwachsenen Menschen mit Behinderungen im Kanton Zürich.: Angebotsinventar 2007. Bericht im Auftrag des Kantonalen Sozialamts Zürich (Sevices and Service Structur regarding residential care for adults with disability in the canton of Zurich). Luzern: Hochschule (Soziale Arbeit); 2008. 14. D'Haene I, Pasman HR, Deliens L, Bilsen J, Mortier F, Vander Stichele R. End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH. 2010;54:1067-1077. 15. Wagemans A, van Schrojenstein Lantman-de-Valk, H, Tuffrey-Wijne I, Widdershoven G, Curfs L. End-of-life decisions: an important theme in the care for people with intellectual
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disabilities. J Intellect Disabil Res. 2010;54(6):516-524. doi:10.1111/j.13652788.2010.01276.x. Wicki MT, Hättich A. End-of-life decisions for people with intellectual disability – a Swiss survey. International Journal of Developmental Disability. 2016; 62(3): 177-181. Online: http://www.tandfonline.com/doi/abs/10.1080/20473869.2015.1107363. Wicki MT, Meier S. Mit Leitlinien die Selbstbestimmung stärken? Effekte von Leitlinien auf Palliative Care und Entscheidungen am Lebensende (Strengthening self-determination with written policies. Effects of written policies on palliative care and end-of-life decisions). Vierteljahresschrift für Heilpädagogik und ihre Nachbargebiete. 2015;84(1):34-45. Strydom A, Shooshtari S, Lee L, et al. Dementia in older adults with intellectual disabilities— Epidemiology, presentation, and diagnosis. Journal of Policy and Practice in Intellectual Disabilities. 2010;7(2):96-110. doi:10.1111/j.1741-1130.2010.00253.x. DEB S, HARE M, PRIOR L, BHAUMIK S. Dementia screening questionnaire for individuals with intellectual disabilities. Br J Psychiatry. 2007;190:440-444. doi:10.1192/bjp.bp.106.024984. Deb S, Hare M, Prior L. Symptoms of dementia among adults with Down's syndrome: A qualitative study. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH. 2007;51(9):726-739. doi:10.1111/j.1365-2788.2007.00956.x. Kalsy S. Manual for the „Assessement for Adults with Developmental Disabilities“ (A.A.D.S.) questionnaire. Birmingham UK: University of Birmingham; 2000. Evenhuis HM. Dementia questionnaire for people with learning disabilities (DLD). UK adaption. San Antonio, TX: Harcourt Assessement; 2007. Zeilinger EL, STIEHL, Katharina A. M., Weber G. A systematic review on assessment instruments for dementia in persons with intellectual disabilities. Research in Developmental Disabilities. 2013;34(11):3962-3977. doi:10.1016/j.ridd.2013.08.013.
ACCEPTED MANUSCRIPT Table 1: Dementia prevalence in Swiss disability care homes
Residential
Residential
homes for
homes for people homes
people with ID* with other
All residential
(in percent, n
93 homes, 7468 percent, n = 47 places)
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(in percent; n = disabilities** (in =140 homes, 10403 places)
homes, 2935
1.8
1.7
Suspected dementia
4.0
1.8
All dementia
5.8
* ID: Intellectual Disability
1.8
3.5
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Diagnosed dementia
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places)
3.5
5.3
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** Other disabilities: primarily sensory, physical or psychological impairment
ACCEPTED MANUSCRIPT Table 2: Dementia among deceased residents with or without intellectual disability in Swiss disability care homes (2008 - 2012)
Deaths without
Total deaths
with ID* in percent
ID* in percent
in percent (n)
(n)
(n)
No dementia
71.4 (100)
86.9 (86)
77.8 (186)
Diagnosed dementia
10.7 (15)
4 (4)
7.9 (19)
Suspected dementia
15.7 (22)
6.1 (6)
2.1 (3)
3 (3)
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*ID: intellectual disability
11.7 (28) 2.5 (6)
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Unknown
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Deaths
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ACCEPTED MANUSCRIPT Table 3: Organisation of care for dementia in Swiss disability care residential homes
Homes for Homes for other
Total, in
with ID, in disabilities, percent (n
P
percent (n
in percent
= 140)
= 93)
(n = 47)
67.7
40.4
58.6
0.002
61.3
42.6
55.0
0.027
psychatrists
45.2
46.8
45.7
0.497
neurologists
22.6
19.1
21,4
0.218
16.1
19.1
17.1
0.200
14.3
0.272
residential
general practitioners
nursing home specialised
nurses not
16.1
10.6
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dementia
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transfer to
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home
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care within
6,4
7.9
0.462
geriatricians
6.5
4.3
5,7
0.459
Other
5.4
2.1
4,3
0.342
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8.6
organised
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people
*: p-value in chi-square test, p<0.05 indicated by bold print
S1936-6574(16)30083-8
DOI:
10.1016/j.dhjo.2016.05.008
Reference:
DHJO 499
To appear in:
Disability and Health Journal
Received Date: 18 October 2015 Revised Date:
19 April 2016
Accepted Date: 15 May 2016
Please cite this article as: Wicki MT, Riese F, Prevalence of dementia and organization of dementia care in Swiss disability care homes, Disability and Health Journal (2016), doi: 10.1016/j.dhjo.2016.05.008. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
1
ACCEPTED MANUSCRIPT Title Prevalence of dementia and organization of dementia care in Swiss disability care homes
Running title
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Dementia in disability care homes
Authors Monika T. Wicki1, Florian Riese2,3
University of Applied Sciences of Special Needs Education, Zurich, Switzerland
2
Division of Psychiatry Research and Psychogeriatric Medicine, University Hospital of
3
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Psychiatry Zurich, Zurich, Switzerland
SC
1
URPP Dynamics of Healthy Aging, University of Zurich, Zurich, Switzerland
Corresponding author: Monika T. Wicki
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University of Applied Sciences of Special Needs Education Schaffhauserstrasse 239 PO Box 5850 8050 Zurich
EP
[email protected] 0041 43 317 12 34
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The views expressed in the submitted article are our own and not an official position of the institution or funders.
Conflict of interest disclosure: The authors declare no conflict of interest.
Acknowledgments: The PALCAP study was funded by SNSF grant 406740_139324 / 1 as part of the NRP67 “End-of-Life” and the University of Applied Sciences of Special Needs Education, Zurich. FR was supported by SNSF NRP67 grant 406740_139363 and the SAMS/Bangerter-Rhyner-Foundation “Health Services Research” grant program.
2
ACCEPTED MANUSCRIPT
Keywords: aging, dementia, prevalence, intellectual disabilities, residential care, care
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organization
Previous presentation of abstracts at meetings regarding the research is acceptable but should be noted on the title page. For copyrighted and/or previously published material (including figures or tables) that is duplicated in the submission, written, signed
SC
permissions from the copyright holder must be uploaded at time of submission.The
Results were presented at the conference “Das dritte Drittel”, Schweizerische Epilepsie
M AN U
Klinik, Zürich, 24. September 2015. The abstract was accepted for presentation at the EAPC world congress in Dublin, 8.-11. June 2016. But no copyrighted and no previously published material is duplicated in the submission.
Word count: 1860
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Abstract word count: 240
Number of references: 23
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EP
Number of tables and figures: 3
1
ACCEPTED MANUSCRIPT Title Prevalence of dementia and organization of dementia care in Swiss disability care homes
Running title
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Dementia in disability care homes
The views expressed in the submitted article are our own and not an official position of
SC
the institution or funders.
Conflict of interest disclosure: The authors declare no conflict of interest.
M AN U
Keywords: aging, dementia, prevalence, intellectual disability, residential care, care
AC C
EP
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organization
2
ACCEPTED MANUSCRIPT Abstract
Background: With higher life expectancy an increasing number of people with
RI PT
intellectual disability (PWID) are at risk for developing dementia.
Objective: Since PWID are an often neglected patient population, the objective of this study was to investigate the prevalence of dementia in residential disability homes in
SC
Switzerland and to describe how residential homes organise dementia care.
Methods: All residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. A subset of questions covered the
M AN U
number of residents with diagnosed and suspected dementia and the organisation of dementia care. The response rate to the dementia-related questions was 32% (n = 140 care homes with 10403 residents).
Results: In residential homes specialised in PWID, 5.8% of the residents were reported
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to have a diagnosed or suspected dementia. In 140 deaths of PWID, 26% (n = 37) died with a diagnosed or suspected dementia. Residential homes for PWID mostly rely on internal resources (67.7%), general practitioners (61.3%) or psychiatrists (45.2%) for the care of residents with dementia, while specialised dementia nurses are rarely
EP
involved (16.1%).
Conclusion: This is the first study in Switzerland to assess the prevalence of dementia in
AC C
PWID. The study indicates a diagnostic gap. Dementia care is provided in a heterogeneous way across Swiss residential homes for people with disability. Since the number of PWID requiring such care will likely increase in the future, best practice examples and guidelines are needed.
3
ACCEPTED MANUSCRIPT Introduction
Increasing longevity has been one of the most remarkable changes in people with intellectual disability (PWID) over the last decades. As life expectancy of PWID extends into older age, dementia is an increasing cause of morbidity and mortality. The
RI PT
prevalence of dementia in PWID is comparable with or even higher than in the general population [1–4]. Preexisting cognitive impairment may complicate the diagnosis of dementia
in
PWID
possibly
leading
to
underdiagnosis
and
consequently
mismanagement [4]. It is therefore of interest to characterize possible diagnostic and
SC
care provision gaps in order to provide a rationale for improvement of care.
In Switzerland – like in many other countries – the majority services for PWID have
M AN U
historically evolved not from the medical or nursing sector but from the social work and pedagogical sector [5]. In care homes for PWID, staff may mainly come from nonmedical, non-nursing background and may therefore lack the specific knowledge and skills for the new challenge which is dementia care, particularly in areas such as pain and symptom management [6]. In order to improve care competencies in these areas,
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knowledge transfer from non-ID dementia care seems to be a promising approach: a specialised prosthetic environment based on non-ID dementia care principles was found to contribute to maintenance of skills and activities in older PWID, likely by facilitating participation on an individual level and providing appropriate intellectual challenges [7,
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8]. Consensus recommendations for the evaluation and management of dementia in PWID have recently become available for the United States [9], but there is currently no specific guidance for Switzerland. Furthermore, dementia in PWID is not covered in
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detail in the Swiss dementia strategy [10], i. e. no specific diagnostic or therapeutic measures or service development aims are included in the strategy despite the approximately 27,000 PWID in Switzerland [11–13]. Again, this lack of consideration for the special needs of PWID with dementia may be at least partially explained by the historical development of disability care services outside the medical paradigm.
The purpose of our study is to broaden the necessary database for a discussion on care organisation for dementia in residential homes for PWID in Switzerland. The objectives of our study were to investigate for the first time the prevalence of dementia in residential homes for PWID in Switzerland and to explore the organisation of dementia
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care in these facilities. We hypothesized that dementia is currently underdiagnosed in Swiss PWID living in residential homes and that dementia care is fragmented due to the lack of specific guidelines and care pathways.
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Methods All residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. The list of residential homes was obtained from the national association for service providers for people with disabilities (INSOS
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Switzerland) and the IVSE (Intercantonal cooperation of social-medical organisations). The survey was distributed on paper to the directors of the residential homes from Oct. 2012 – Jan. 2013 and was available in German and French. The directors were asked to
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serve as informants on PWID living in their corresponding residential homes. In order to improve response rates, non-responding directors received a reminder phone call one month later. Questionnaires were returned to the investigators by mail. The survey was based on the questionnaires developed by D’Haene et al. [14] and Wagemans et al. [15] and is available from the corresponding author upon request. As previously published
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[16,17], the survey comprised two parts, one part focusing on written policies on palliative care and training in palliative care (40 questions), the other on people who died within the last five years, including demographic variables (26 questions). Regarding dementia, four questions investigated the prevalence and organisation of
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care: (1) number of residents and number of residents with diagnosed dementia at present time, (2) number of residents with suspected dementia at present time, (3)
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number of deaths and number of deaths with diagnosed or suspected dementia in the last five years and (4) organisation of dementia care. For the last question, directors could choose several answers from the following options: care in residential home by regular staff (use of internal resources), consultation with psychiatrists, neurologists, geriatricians, general practitioners, specialised nurses for people with dementia, change in accommodation such as transfer to nursing home, or other. Due to the type of study, the cantonal ethics committee Zurich, Switzerland, waived the necessity for ethics approval. Data from the paper questionnaires was entered into spreadsheet format manually and analyzed using SPSS version 21. Results are presented with descriptive
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statistics. Where appropriate, differences were analysed with Chi-square tests. P ≤ 0.05 was considered statistically significant. Results
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Residential home characteristics
The total response rate to the whole survey was 58% (N = 254 residential homes, i. e. their directors). The subset of dementia-related questions reported here were answered by 140 residential home directors (32%) covering 93 residential homes for PWID and
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47 for people with primarily sensory, physical or psychological impairment. Eightythree directors reported to have had at least one death among residents in their facility
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during the past five years. The mean age of all residents was 45.5 years (SD 9.1). 65% of the residential homes were smaller homes providing care for 1–49 people, 25% medium-sized homes providing care for 50–100 people and 65% larger homes providing care for more than 100 people. The smallest home provided care for six
Dementia prevalence
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people; the largest for 304 people.
In 2012, 7468 residents were living in the 93 residential homes for PWID, of which,
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141 residents had a diagnosis of dementia (1.8%). Residential home directors and caregivers suspected dementia for additional 305 (4%) of the residents (see table 2). The 47 residential homes for people with primarily sensory, physical or psychological
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impairment provide housing for 2935 residents. Of these, 51 residents (1.7%) had a diagnosed dementia and 55 residents (1.8%) had a suspected dementia (see table 2).
Insert Table 1 about here
Deaths with dementia
Eighty-three residential homes, where people had died within the last five years, provided detailed information on 239 deceased residents (140 with ID, 99 without ID).
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Of these, 7.9% had a diagnosed dementia. Dementia was suspected in a further 11.7% of deaths (see table 3).
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Insert Table 2 about here
Organisation of dementia care
People with dementia living in residential disability homes most frequently receive care
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by the regular staff, i. e. with internal resources (58.6%), or by general practitioners (55.0%) and psychiatrists (45.7%). In only 16.1% of the residential homes a specialised dementia nurse is asked for support in caring for residents with dementia. When
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diagnosed with dementia, in 17.1% of the residential homes residents are transferred to nursing homes (see table 4). Although the differences are small, more residential homes for PWID rely on internal staff and general practitioners than homes for people with other disabilities (χ2(1, N = 140) = 9.60, p < .05 and χ2(1, N = 140) = 4.43, p < .05,
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respectively).
Insert Table 3 about here
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In 53 of 82 residential homes (65%), in which care of persons with dementia is organised within the organisation, psychiatrists are regularly involved, and in 63 of 82 residential homes (77%) a physician is involved (28 of them do not involve a
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psychiatrist too).
Discussion
To our knowledge, this is the first Swiss study on prevalence of dementia and organisation of dementia care in the often medically underserved population of people with disabilities. We found a very low rate of diagnosed dementia in Swiss residential homes for disability care. In residential homes for PWID, about one quarter of deceased residents had either a diagnosed or suspected dementia. Dementia care in residential
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homes for PWID was mostly provided by internal staff and general practitioners. Except for psychiatrists, dementia specialists were rarely consulted.
Compared to previous studies on the prevalence of dementia in PWID in other countries (reviewed in [18]), the prevalence of diagnosed dementia was very low in our study
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(1.8%). Dementia was suspected in a higher number of PWID (4.0%), providing further evidence for a diagnostic gap in this population. As preexisting cognitive impairments can complicate the diagnosis of dementia in PWID, several instruments, e.g. [19–22] and assessment guidelines [9] have been developed in order to aid the diagnostic
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process. However, only few of these are available in German [23] and –in our experience– they are rarely used by non-specialists. Future policies and training activities should promote the use of such tools in order to narrow the diagnostic gap and
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consequently improve access to dementia care. At the level of residential homes, a higher level of formalized dementia diagnoses could stimulate the development and implementation of prosthetic environments suitable for PWID with dementia – which may help conserving residual skills and abilities [8]. Dementia was diagnosed or suspected in about one quarter of deaths that occurred in PWID. Due to the increasing
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longevity of PWID, it is likely that the need for dementia end-of-life care will further increase in the future. Staff training in palliative care as well as a focus on advance care planning may help preparing institutions and residents better for this trend.
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In terms of organisation of dementia care, our data indicates that the majority of residential facilities for PWID either rely on inhouse staff or general practitioners to provide care. Psychiatrists are the third group of care providers that play a major role.
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For future educational activities, these groups are therefore preferential targets. In contrast, specialised dementia nurses or geriatricians are consulted in only a minority of residential homes. This may – at least partially – reflect the challenges in collaboration between disability institutions and external specialists who are often not used to the communication needs of PWID. Surprisingly, PWID were transferred to nursing homes for dementia care in only about 16% of residential homes. If housing continuity is to be maintained at the current level, staff of residential homes will likely need more training in dementia and improved contact to specialist dementia care.
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The major limitation of this study is its retrospective design which favors recall bias. Diagnosed and suspected dementia in PWID were furthermore reported by directors of residential homes not by treating physicians. However, in our view both of these primary sources of bias rather work in favour of underestimating a possible diagnostic gap. As cross-sectional study, it does not allow us to draw definite conclusions about
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trends in prevalence or care organisation. Our study is furthermore limited by its response rate of only 32% to the dementia-related questions, which could at least partly be driven by the directors’ underestimation of the problem in their respective care
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homes.
In conclusion, our survey provides evidence for a diagnostic gap regarding dementia in persons with disabilities living in Swiss residential homes. We furthermore provide
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evidence for heterogeneity of dementia care among the facilities. Non-specialist care providers like inhouse staff and general practitioners shoulder the majority of dementia care in PWID. Their efforts should be supported by collecting best-practice examples, specific training and development of guidance policies. Future research should address which factors determine whether a PWID with dementia is transferred to a nursing
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dementia.
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home and which interventions are effective in stabilizing quality of life in PWID with
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ACCEPTED MANUSCRIPT Table 1: Dementia prevalence in Swiss disability care homes
Residential
Residential
homes for
homes for people homes
people with ID* with other
All residential
(in percent, n
93 homes, 7468 percent, n = 47 places)
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(in percent; n = disabilities** (in =140 homes, 10403 places)
homes, 2935
1.8
1.7
Suspected dementia
4.0
1.8
All dementia
5.8
* ID: Intellectual Disability
1.8
3.5
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Diagnosed dementia
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places)
3.5
5.3
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** Other disabilities: primarily sensory, physical or psychological impairment
ACCEPTED MANUSCRIPT Table 2: Dementia among deceased residents with or without intellectual disability in Swiss disability care homes (2008 - 2012)
Deaths without
Total deaths
with ID* in percent
ID* in percent
in percent (n)
(n)
(n)
No dementia
71.4 (100)
86.9 (86)
77.8 (186)
Diagnosed dementia
10.7 (15)
4 (4)
7.9 (19)
Suspected dementia
15.7 (22)
6.1 (6)
2.1 (3)
3 (3)
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*ID: intellectual disability
11.7 (28) 2.5 (6)
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Unknown
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Deaths
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ACCEPTED MANUSCRIPT Table 3: Organisation of care for dementia in Swiss disability care residential homes
Homes for Homes for other
Total, in
with ID, in disabilities, percent (n
P
percent (n
in percent
= 140)
= 93)
(n = 47)
67.7
40.4
58.6
0.002
61.3
42.6
55.0
0.027
psychatrists
45.2
46.8
45.7
0.497
neurologists
22.6
19.1
21,4
0.218
16.1
19.1
17.1
0.200
14.3
0.272
residential
general practitioners
nursing home specialised
nurses not
16.1
10.6
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dementia
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transfer to
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home
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care within
6,4
7.9
0.462
geriatricians
6.5
4.3
5,7
0.459
Other
5.4
2.1
4,3
0.342
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8.6
organised
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people
*: p-value in chi-square test, p<0.05 indicated by bold print