journal article Open Access Mar 01, 2025

‘Firstly, I’m not treated like a fool.’—the perspective of people with dementia on a dementia-friendly hospital

View at Publisher Save 10.1093/ageing/afaf048
Abstract
Abstract

Background
Dementia-friendly hospitals are increasingly discussed in healthcare, politics, research and society as a way to improve hospital stays for people with dementia. However, the perspective of people with dementia is often underrepresented, and current definitions and concepts are primarily based on the expertise of healthcare professionals.


Objectives
To identify characteristics of a dementia-friendly hospital from the perspective of people with dementia.


Methods
A qualitative design embedded in a case study was used. We conducted 15 semi-structured interviews with people with dementia during their hospital stay. The interviews were analysed using reflexive thematic analysis with an inductive approach. In our study, we adopted a participatory approach and actively involved people with dementia and other stakeholders in the development of the interview guide and in the data analysis.


Results
The participants expect more than what’s necessary from a dementia-friendly hospital, as presented by eight characteristics identified: (i) The most important thing is how we treat each other; (ii) Someone cares about ME; (iii) No hully gully! I want professional care; (iv) Focusing on my goals; (v) LOOK! I’ve still got capabilities; (vi) Skipping Groundhog Day; (vii) A bit of both: mingle and single, and (viii) Recognising what relatives mean to me.


Conclusion
Our results highlight the importance of involving people with dementia in the development of dementia-friendly hospitals as only they have the lived experience and a different perspective from that of healthcare professionals.
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References
43
[1]
Jensen "“If only they could understand me!” acute hospital care experiences of patients with Alzheimer’s disease" Dementia (2018) 10.1177/1471301218820483
[2]
Digby "The liminality of the patient with dementia in hospital" J Clin Nurs (2018) 10.1111/jocn.13869
[3]
Hung "“little things matter!” exploring the perspectives of patients with dementia about the hospital environment" Int J Older People Nurs (2017) 10.1111/opn.12153
[4]
Reilly "The experiences and perceptions of care in acute settings for patients living with dementia: A qualitative evidence synthesis" Int J Nurs Stud (2019) 10.1016/j.ijnurstu.2019.04.018
[5]
Fogg "Hospital outcomes of older people with cognitive impairment: An integrative review" Int J Geriatr Psychiatry (2018) 10.1002/gps.4919
[6]
Godard-Sebillotte "Avoidable hospitalizations in persons with dementia: A population-wide descriptive study (2000–2015)" CANADIAN GERIATRICS JOURNAL (2021) 10.5770/cgj.24.486
[7]
Shepherd "Hospitalisation rates and predictors in people with dementia: A systematic review and meta-analysis" BMC Med (2019) 10.1186/s12916-019-1369-7
[8]
Mukadam "A systematic review of the prevalence, associations and outcomes of dementia in older general hospital inpatients" Int Psychogeriatr (2010)
[9]
Bickel "The prevalence of dementia and cognitive impairment in hospitals" Dtsch Arztebl Int (2018) 10.3238/arztebl.2018.0733
[10]
Manietta "Characteristics of dementia-friendly hospitals: An integrative review" BMC Geriatr (2022) 10.1186/s12877-022-03103-6
[11]
Munsterman "Dementia friendly in the context of hospitalization: A concept analysis using the Walker & Avant Method" J Adv Nurs (2024) 10.1111/jan.16133
[12]
Hebert "Dementia friendly initiatives: A state of the science review" Dementia (London) (2019) 10.1177/1471301217731433
[13]
Mann "Co-research with people living with dementia for change" Action Research (2018) 10.1177/1476750318787005
[14]
Charlesworth "Public and patient involvement in dementia research: Time to reflect?" Dementia (London) (2018) 10.1177/2397172x18802501
[15]
Adams "Collecting data on the experiences and perspectives of people with dementia in the acute care hospital setting: A systematic scoping review" Int J Older People Nurs (2023) 10.1111/opn.12535
[16]
World Health Organization
[17]
World Health Organization (2017)
[18]
Yin (2018)
[19]
Creswell (2013)
[20]
Rommerskirch-Manietta "Participatory development of a framework to actively involve people living with dementia and those from their social network, and healthcare professionals in conducting a systematic review: The DECIDE-SR protocol" Res Involv Engagem (2023) 10.1186/s40900-023-00461-2
[21]
Pollock "Development of the ACTIVE framework to describe stakeholder involvement in systematic reviews" J Health Serv Res Policy (2019) 10.1177/1355819619841647
[22]
Finderup "Developing and testing guidance to support researchers engaging patient partners in health-related research" Res Involv Engagem (2022) 10.1186/s40900-022-00378-2
[23]
Polit (2021)
[24]
Dewing "Participatory research. A method for process consent with persons who have dementia" Dementia (2007) 10.1177/1471301207075625
[25]
A worked example of Braun and Clarke’s approach to reflexive thematic analysis

David Byrne

Quality & Quantity 2021 10.1007/s11135-021-01182-y
[26]
Braun "One size fits all? What counts as quality practice in (reflexive) thematic analysis?" Qual Res Psychol (2020) 10.1080/14780887.2020.1769238
[27]
VERBI Software. (2021)
[28]
Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ)
[29]
Sakamoto "Waiting for home: The experience of delayed discharge for people with dementia" Int J Older People Nurs (2023) 10.1111/opn.12516
[30]
Toubøl "“even though I have dementia, I prefer that they are personable”: A qualitative focused ethnography study in a Danish general hospital setting" Glob Qual Nurs Res (2020) 10.1177/2333393619899388
[31]
Dementia: Assessment, management and support for people living with dementia and their carers (2018)
[32]
Kirchen-Peters (2019)
[33]
Manietta "Dementia-friendly hospital-the perspective of professional dementia experts" J Clin Nurs (2024) 10.1111/jocn.17422
[34]
Digby "The experience of people with dementia and nurses in hospital: An integrative review" J Clin Nurs (2017) 10.1111/jocn.13429
[35]
Nguyen "Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature" Dementia (London) (2020) 10.1177/1471301218800122
[36]
Alzheimer's Disease International (2019)
[37]
Oliveira "Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: Qualitative study" Ageing Soc (2023) 10.1017/s0144686x21000660
[38]
Manietta "Contextualizing the results of an integrative review on the characteristics of dementia-friendly hospitals: A workshop with professional dementia experts" BMC Geriatr (2023) 10.1186/s12877-023-04312-3
[39]
Dewing "What is the current state of care for older people with dementia in general hospitals? A literature review" Dementia (London) (2016) 10.1177/1471301213520172
[40]
Reid "Nurses' attitudes towards caring for people with dementia in acute hospital settings: A literature review" Nurs Older People (2020) 10.7748/nop.2020.e1244
[41]
Digby "People with dementia and the hospital environment: The view of patients and family carers" Intrnational Journal of Older People Nursing (2014) 10.1111/opn.12014
[42]
Gove "Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)" Aging Ment Health (2018) 10.1080/13607863.2017.1317334
[43]
Bickel (2019)
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