Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study

Health Policy - Tập 125 - Trang 1013-1022 - 2021
Valentina Bressan1, Henriette Hansen2, Kim Koldby3, Knud Damgaard Andersen4, Allette Snijder5, Valentina Tageo6, Natalia Allegretti6, Federica Porcu6, Sara Marsillas7, Alvaro García7, Alvisa Palese1
1Department of Medicine, University of Udine, Viale Ungheria 20, 33010 Udine, Italy
2South Denmark European Office, Avenue Palmerston 3, B-1000 Brussels, Belgium
3University College Lillebaelt, Erhvervsakademi og Professionshøjskole, Niels Bohrs Allé 1, 5230 Odense, Denmark
4Odense Kommune, Departement for the elderly and persons with disabilities (ÆHF), Ørbækvej 100, 5220 Odense SØ
5Healthy Ageing Network Northern Netherlands, L.J. Zielstraweg 2, 9713 GX Groningen, The Netherlands
6European Connected Health Alliance, Innovation Centre - Catalyst Inc, Queen's Road, BT3 9DT Belfast, Northern Ireland - United Kingdom
7Matia Gerontological Institute, Calle Orense, 6 Planta 13 1A, 28020 Madrid, Spain

Tài liệu tham khảo

van den Noort, 2019, A systematic review on the possible relationship between bilingualism, cognitive decline, and the onset of dementia, Behav Sci, 9, 81, 10.3390/bs9070081 Wolters, 2020, Twenty-seven-year time trends in dementia incidence in Europe and the United States: the Alzheimer cohorts consortium, Neurology, 95, e519, 10.1212/WNL.0000000000010022 Lethin, 2019, Prevalence of dementia diagnoses not otherwise specified in eight European countries: a cross-sectional cohort study, BMC Geriatrics, 19, 172, 10.1186/s12877-019-1174-3 Cunningham, 2015, Ulster Med J, 84, 79 2019 Cashin, 2019, Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience, Int Psychogeriatr, 31, 869, 10.1017/S1041610218001357 Cantarero-Prieto, 2019, The economic cost of dementia: a systematic review, Dementia Prince, 2016 Broda, 2017, Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries, BMC Health Services Res, 17, 518, 10.1186/s12913-017-2456-0 Richters, 2017, Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity, Alzheimer's Res Ther, 9, 26, 10.1186/s13195-017-0251-0 Chiatti, 2018, Utilization of formal and informal care by community-living people with dementia: a comparative study between Sweden and Italy, Int J Environ Res Public Health, 15, 2679, 10.3390/ijerph15122679 Greenwood, 2019, Experiences and support needs of older carers: a focus group study of perceptions from the voluntary and statutory sectors, Maturitas, 123, 40, 10.1016/j.maturitas.2019.02.003 Stephan, 2018, Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries, BMC Geriatrics, 18, 131, 10.1186/s12877-018-0816-1 Kerpershoek L, Wolfs C, Verhey F, Jelley H, Woods B, Bieber A, et al. (2019). Optimizing access to and use of formal dementia care: qualitative findings from the European actifcare study. health and social care in the community 2019;27(5):e814-23. Kim, 2017, Characteristics of qualitative descriptive studies: a systematic review, Res Nurs Health, 40, 23, 10.1002/nur.21768 Embracing Dementia (EDEN). Available at: http://embracingdementia.eu /[accessed 21.01.2020]. Carrera, 2013, Long-term care systems in comparative perspective: care needs, informal and formal coverage, and social impacts in European countries, 23 Patton, 2015 Hennink, 2007 Lambert, 2008, Combining individual interviews and focus groups to enhance data richness, J Adv Nurs, 62, 228, 10.1111/j.1365-2648.2007.04559.x King, 2010 Elo, 2008, The qualitative content analysis process, J Adv Nurs, 62, 107, 10.1111/j.1365-2648.2007.04569.x Flik, 2004, Triangulation in qualitative research, 178 Graneheim, 2004, Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness, Nurse Educ Today, 24, 105, 10.1016/j.nedt.2003.10.001 Korstjens, 2018, Series: practical guidance to qualitative research. Part 4: trustworthiness and publishing, European J General Pract, 24, 120, 10.1080/13814788.2017.1375092 European Union Regulation 2016 /679. Available at: https://eur-lex.europa.eu/legal-content/EN/TXT/?qid=1552662547490&uri=CELEX%3A32016R0679 [accessed 15.01.2020]. Estrada Fernández, 2019, Informal care. European situation and approximation of a reality, Health Policy, 123, 1163, 10.1016/j.healthpol.2019.09.007 Peterson, 2016, In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences, BMC Geriatrics, 16, 164, 10.1186/s12877-016-0338-7 Robertson, 2019, Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes, Int J Geriatr Psychiatry, 34, 1784, 10.1002/gps.5193 Dam, 2018, A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members, Int Psychogeriatr, 30, 881, 10.1017/S1041610217000898 Millenaar, 2016, The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review, Int J Geriatr Psychiatry, 31, 1261, 10.1002/gps.4502 Bremer, 2017, Informal and formal care: Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries, Health Policy, 121, 613, 10.1016/j.healthpol.2017.03.013 Hallberg, 2013, Dementia care in eight European countries: developing a mapping system to explore systems, J Nurs Scholarsh, 45, 412, 10.1111/jnu.12046 Hengelaar, 2018, Exploring the collaboration between formal and informal care from the professional perspective-A thematic synthesis, Health Soc Care Commun, 26, 474, 10.1111/hsc.12503 Smith, 2018, The impact of befriending and peer support on family carers of people living with dementia: a mixed methods study., Arch Gerontol Geriatrics, 76, 188, 10.1016/j.archger.2018.03.005 Smith, 2014, The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review, Am J Alzheimer's Dis Other Dementias®, 29, 8, 10.1177/1533317513505135 Ryder, 2016, From togetherness to loneliness: supporting people with dementia, Br J Community Nurs, 21, 464, 10.12968/bjcn.2016.21.9.464 Jayasekara, 2012, Focus groups in nursing research: methodological perspectives, Nurs Outlook, 60, 411, 10.1016/j.outlook.2012.02.001 Morse, 2015, Critical analysis of strategies for determining rigor in qualitative inquiry, Qual Health Res, 25, 1212, 10.1177/1049732315588501 van Nes, 2010, Language differences in qualitative research: is meaning lost in translation?, European J Ageing, 7, 313, 10.1007/s10433-010-0168-y The Danish Ministry of Health. Denmark's National Follow-up to the UNECE Regional Implementation Strategy (RIS) of the Madrid Plan of Action on Ageing (MIPAA) from 2012-2016; 2017. Available at: https://www.unece.org/fileadmin/DAM/pau/age/country_rpts/2017/DNK_-_National_Report.pdf [accessed 18.04.2021]. ISTAT. Popolazione residente al 1° gennaio 2019. Available at: http://dati.istat.it/Index.aspx?QueryId=18460 [accessed 18.04.2021]. Di Fiandra, 2015, Italian dementia national plan working group. The Italian dementia national plan, Commentary. Annali - Istituto Superiore di Sanità, 51, 261 De Cola, 2017, Unmet needs for family caregivers of elderly people with dementia living in Italy: what do we know so far and what should we do next?, Inquiry, 54 World Health Organization (WHO). WHO Global Dementia Observatory Provisional Country Profile 2017 Netherlands; 2017a. Available at: https://www.who.int/mental_health/neurology/dementia/Netherlands_GDO_country_profile.pdf [accessed 18.04.2021]. European Commission (2016). The Netherlands Health Care & Long-Term Care Systems. Available at: https://ec.europa.eu/info/sites/info/files/file_import/joint-report_nl_en_2.pdf [accessed 18.04.2021]. Instituto Nacional de Estadística (INE). Demographic phenomena, 2019. Available at: https://www.ine.es/dyngs/INEbase/en/operacion.htm?c=Estadistica_C&cid=1254736177012&menu=ultiDatos&idp=1254734710990 [accessed 18.04.2021]. Ruisoto, 2020, Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia, Arch Gerontol Geriatr, 86, 10.1016/j.archger.2019.103952 Ministerio de Sanidad, Servicios Sociales e Igualdad (MSCBS) (2012) Ministry of Health, Social Services and Equality. National Health System of Spain, 2012. Available at: https://www.mscbs.gob.es/en/organizacion/sns/docs/sns2012/SNS012__Ingles.pdf [accessed 18.04.2021]. Collecchia, 2019, [Robotics in elderly care], Assist Inferm Ric, 38, 152