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Open Access 01-12-2017 | Research Article

Prioritizing problems in and solutions to homecare safety of people with dementia: supporting carers, streamlining care

Authors: Lorainne Tudor Car, Mona El-Khatib, Robert Perneczky, Nikolaos Papachristou, Rifat Atun, Igor Rudan, Josip Car, Charles Vincent, Azeem Majeed

Published in: BMC Geriatrics | Issue 1/2017

Abstract

Background

Dementia care is predominantly provided by carers in home settings. We aimed to identify the priorities for homecare safety of people with dementia according to dementia health and social care professionals using a novel priority-setting method.

Methods

The project steering group determined the scope, the context and the criteria for prioritization. We then invited 185 North-West London clinicians via an open-ended questionnaire to identify three main problems and solutions relating to homecare safety of people with dementia. 76 clinicians submitted their suggestions which were thematically synthesized into a composite list of 27 distinct problems and 30 solutions. A group of 49 clinicians arbitrarily selected from the initial cohort ranked the composite list of suggestions using predetermined criteria.

Results

Inadequate education of carers of people with dementia (both family and professional) is seen as a key problem that needs addressing in addition to challenges of self-neglect, social isolation, medication nonadherence. Seven out of top 10 problems related to patients and/or carers signalling clearly where help and support are needed. The top ranked solutions focused on involvement and education of family carers, their supervision and continuing support. Several suggestions highlighted a need for improvement of recruitment, oversight and working conditions of professional carers and for different home safety-proofing strategies.

Conclusions

Clinicians identified a range of suggestions for improving homecare safety of people with dementia. Better equipping carers was seen as fundamental for ensuring homecare safety. Many of the identified suggestions are highly challenging and not easily changeable, yet there are also many that are feasible, affordable and could contribute to substantial improvements to dementia homecare safety.

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Alzheimer’s Society. Statistics [Internet]. Lead. Fight against Dement. 2014. Available from: http://www.alzheimers.org.uk/statistics. Accessed 11 Jan 2017.

Matthews FE, Arthur A, Barnes LE, Bond J, Jagger C, Robinson L, et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet (London, England). Elsevier; 2013;382:1405–12.

Alzheimer’s Society. Dementia 2014: Opportunity for change [Internet]. London, UK; 2014. Available from: https://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2317. Accessed 11 Jan 2017.

World Health Organization. Dementia: a public health priority [Internet]. Geneva: World Health Organization; 2012. Available from: http://www.who.int/mental_health/publications/dementia_report_2012/en/. Accessed 11 Jan 2017.

Buckner L, Yeandle S. Valuing Carers 2011 Calculating the value of carers’ support [Internet]. Leeds, UK; 2011. Available from: http://circle.leeds.ac.uk/files/2012/08/110512-circle-carers-uk-valuing-carers.pdf. Accessed 11 Jan 2017.

Macdonald MT, Lang A, Storch J, Stevenson L, Barber T, Iaboni K, et al. Examining markers of safety in homecare using the international classification for patient safety. BMC Health Serv. Res. [Internet]. 2013 [cited 2015 Feb 12];13:191. Available from: http://www.biomedcentral.com/1472-6963/13/191

Global Observatory for Ageing and Dementia Care. World Alzheimer Report 2013 Journey of Caring AN ANALYSIS OF LONG-TERM CARE FOR DEMENTIA [Internet]. London, UK; 2013. Available from: http://www.alz.co.uk/research/WorldAlzheimerReport2013.pdf. Accessed 11 Jan 2017.

Lang A, Edwards N, Fleiszer A. Safety in home care: a broadened perspective of patient safety. Int. J. Qual. Health Care [Internet]. 2008 [cited 2015 Feb 9];20:130–5. Available from: http://www.ncbi.nlm.nih.gov/pubmed/18158294.

Henriksen K, Joseph A, Zayas-Cabán T. The human factors of home health care: a conceptual model for examining safety and quality concerns. J. Patient Saf. [Internet]. 2009 [cited 2015 Feb 13];5:229–36. Available from: http://www.ncbi.nlm.nih.gov/pubmed/22130216

10.

Sears N, Baker GR, Barnsley J, Shortt S. The incidence of adverse events among home care patients. Int J Qual Health Care. 2013;25:16–28.CrossRefPubMed

11.

Care Quality Comission. The state of health care and adult social care in England 2013/14 [Internet]. Gallowgate, UK; 2014. Available from: http://socialwelfare.bl.uk/subject-areas/services-activity/health-services/carequalitycommission/168545state-of-care-201314-full-report-1.1.pdf. Accessed 11 Jan 2017.

12.

Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C. Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda. Age Ageing. 2015;44:985–93.CrossRefPubMedPubMedCentral

13.

Rudan I, Chopra M, Kapiriri L, Gibson J, Ann Lansang M, Carneiro I, et al. Setting priorities in global child health research investments: universal challenges and conceptual framework. Croat. Med. J. [Internet]. 2008 [cited 2015 Mar 2];49:307–17. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2443616&tool=pmcentrez&rendertype=abstract

14.

Rudan I, Gibson JL, Ameratunga S, El Arifeen S, Bhutta ZA, Black M, et al. Setting priorities in global child health research investments: guidelines for implementation of CHNRI method. Croat Med J. 2008;49:720–33.CrossRefPubMedPubMedCentral

15.

Rudan I, El Arifeen S, Bhutta ZA, Black RE, Brooks A, Chan KY, et al. Setting research priorities to reduce global mortality from childhood pneumonia by 2015. PLoS Med. 2011;8:e1001099.CrossRefPubMedPubMedCentral

16.

NHS Health Research Authority. Defining Research [Internet]. London, UK; 2013. Available from: http://www.hra.nhs.uk/documents/2016/06/defining-research.pdf. Accessed 11 Jan 2017.

17.

IRAS Guidance. Integrated Research Application System Project Filter Collated Guidance [Internet]. 2009. Available from: https://www.myresearchproject.org.uk/help/Help%20Documents/PdfDocuments/IrasQuestionFilterGuidance.pdf. Accessed 11 Jan 2017.

18.

Tudor Car L, Papachristou N, Gallagher J, Samra R, Wazny K, El-Khatib M, et al. Identification of priorities for improvement of medication safety in primary care: a PRIORITIZE study. BMC Fam. Pract. [Internet]. 2016 [cited 2016 Dec 19];17:160. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=5112691&tool=pmcentrez&rendertype=abstract

19.

Tudor Car L, Papachristou N, Urch C, Majeed A, El–Khatib M, Aylin P, et al. Preventing delayed diagnosis of cancer: clinicians’ views on main problems and solutions. J. Glob. Health [Internet]. 2016 [cited 2016 Dec 27];6. Available from: http://www.jogh.org/documents/issue201602/jogh-06-020901.XML

20.

Tudor Car L, Papachristou N, Bull A, Majeed A, Gallagher J, El-Khatib M, et al. Clinician-identified problems and solutions for delayed diagnosis in primary care: a PRIORITIZE study. BMC Fam. Pract. [Internet]. 2016 [cited 2016 Dec 27];17:131. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=5017013&tool=pmcentrez&rendertype=abstract

21.

Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am. J. Nurs. [Internet]. 2008 [cited 2015 Feb 23];108:23–7; quiz 27. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2791523&tool=pmcentrez&rendertype=abstract

22.

Parker D, Mills S, Abbey J. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. Int. J. Evid. Based. Healthc. [Internet]. 2008 [cited 2014 Dec 21];6:137–72. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21631819.

23.

Medical Advisory Secretariat - Ministry of health and Long-Term Care. Caregiver- and patient-directed interventions for dementia: an evidence-based analysis. Ont. Health Technol. Assess. Ser. [Internet]. 2008 [cited 2015 Jan 12];8:1–98. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3377513&tool=pmcentrez&rendertype=abstract

24.

de Costa A. With power comes scrutiny: judicial review of clinical commissioning group decisions. Med. Leg. J. [Internet]. SAGE PublicationsSage UK: London, England; 2013 [cited 2016 Dec 27];81:36–9. Available from: http://journals.sagepub.com/doi/abs/10.1177/0025817212472862?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3Dpubmed.

25.

Triggle N. Care spending “cut by fifth in 10 years.” BBC News. 2015

26.

Newbronner L, Chamberlain R, Borthwick R, Baxter M, Glendinning C. A Road Less Rocky – Supporting Carers of People with Dementia. London: UK; 2013.

27.

Knapp M, Comas-Herrera A, Somani A, Banerjee S. Dementia: International Comparisons, PSSRU Discussion Paper 2418 [Internet]. London: UK; 2014. Available from: https://www.nao.org.uk/wpcontent/uploads/2007/07/0607604_International_Comparisons.pdf. Accessed 11 Jan 2017.

28.

The Department of Health. Prime Minister’s challenge on dementia 2020 [Internet]. London, UK; 2015. Available from: https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020. Accessed 11 Jan 2017.

29.

Singh H, Petersen LA, Daci K, Collins C, Khan M, El-Serag HB. Reducing referral delays in colorectal cancer diagnosis: is it about how you ask? Qual. Saf. Health Care [Internet]. 2010 [cited 2014 Nov 14];19:e27. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2965264&tool=pmcentrez&rendertype=abstract

30.

Sarkar U, Bonacum D, Strull W, Spitzmueller C, Jin N, López A, et al. Challenges of making a diagnosis in the outpatient setting: a multi-site survey of primary care physicians. BMJ Qual. Saf. [Internet]. 2012 [cited 2014 Sep 29];21:641–8. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3680371&tool=pmcentrez&rendertype=abstract

31.

Viergever RF, Olifson S, Ghaffar A, Terry RF. A checklist for health research priority setting: nine common themes of good practice. Health Res Policy Syst. 2010;8:36.CrossRefPubMedPubMedCentral

32.

Giles J. Social science lines up its biggest challenges. Nature. 2011;470:18–9 Nature Publishing Group.CrossRefPubMed

33.

Surowiecki J. The Wisdom of Crowds [Internet]. Knopf Doubleday Publishing Group; 2005 [cited 2014 Nov 20]. Available from: http://books.google.com/books?id=hHUsHOHqVzEC&pgis=1

34.

Nicholls K, Chapman K, Shaw T, Perkins A, Sullivan MM, Crutchfield S, et al. Enhancing response rates in physician surveys: the limited utility of electronic options. Health Serv. Res. [Internet]. 2011 [cited 2014 Dec 20];46:1675–82. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3207199&tool=pmcentrez&rendertype=abstract

35.

Wiebe ER, Kaczorowski J, MacKay J. Why are response rates in clinician surveys declining? Can Fam Physician [Internet]. 2012 [cited 2014 Dec 20];58:e225-228. Available from: http://www.cfp.ca/content/58/4/e225.full

36.

Jepson C, Asch DA, Hershey JC, Ubel PA. In a mailed physician survey, questionnaire length had a threshold effect on response rate. J. Clin. Epidemiol. [Internet]. 2005 [cited 2014 Dec 20];58:103–5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15649678.

37.

Reja U, Lozar Manfreda K, Hlebec V, Vehovar V. Open-ended vs. Close-ended Questions in Web Questionnaires - WebSM [Internet]. Adv. Methodol. Stat. (Metodološki Zv. 2003. Available from: http://mrvar2.fdv.uni-lj.si/pub/mz/mz19/reja.pdf. Accessed 11 Jan 2017.

38.

Health Secretary launches new patient safety collaboratives. NHS Improving Quality; 2014.

Title: Prioritizing problems in and solutions to homecare safety of people with dementia: supporting carers, streamlining care
Authors: Lorainne Tudor Car
Mona El-Khatib
Robert Perneczky
Nikolaos Papachristou
Rifat Atun
Igor Rudan
Josip Car
Charles Vincent
Azeem Majeed
Publication date: 01-12-2017
Publisher: BioMed Central
Published in: BMC Geriatrics / Issue 1/2017
Electronic ISSN: 1471-2318
DOI: https://doi.org/10.1186/s12877-017-0415-6

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