scholarly journals “Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

2021 ◽  
Vol 18 (22) ◽  
pp. 12233
Author(s):  
Clarissa Giebel ◽  
Sarah Robertson ◽  
Audrey Beaulen ◽  
Sandra Zwakhalen ◽  
Dawn Allen ◽  
...  
Keyword(s):  
The Netherlands ◽  
Thematic Analysis ◽  
Health Care Professionals ◽  
Systems Of Care ◽  
Dementia Care ◽  
Service Usage ◽  
Care Services ◽  
People With Dementia ◽  
Informal Carers ◽  
The Uk

Background: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. Methods: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia’s, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. Results: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country’s systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. Conclusions: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.

scholarly journals Personalisation, customisation and bricolage: how people with dementia and their families make assistive technology work for them

2018 ◽  
Vol 39 (11) ◽  
pp. 2502-2519 ◽  
Author(s):  
Grant Gibson ◽  
Claire Dickinson ◽  
Katie Brittain ◽  
Louise Robinson
Keyword(s):  
Technology Use ◽  
Dementia Care ◽  
Assistive Technologies ◽  
Everyday Practice ◽  
Structured Interviews ◽  
Manage Care ◽  
Age In Place ◽  
Care Services ◽  
People With Dementia ◽  
The Everyday

AbstractAssistive technologies (ATs) are being ‘mainstreamed’ within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by ‘bricolage’ or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care.

Japan

2019 ◽  
pp. 45-54
Author(s):  
Yumi Shindo ◽  
Akira Homma
Keyword(s):  
Local Governments ◽  
Local Population ◽  
The Elderly ◽  
Dementia Care ◽  
Term Care ◽  
Care Services ◽  
People With Dementia ◽  
Care Workers ◽  
Educational Programmes ◽  
Set Up

There are two strengths of dementia care services available in Japan. One strength is the creation of the Integrated Community Care System, which aims to provide various services that the elderly might need within their areas of residence. It is the responsibility of local governments to set up the ICCS, because each community has different social resources, as well as differences in the local population and the number of elderly individuals. The other strength lies in the various educational opportunities in dementia available to medical and long-term care professionals. In 2001, the national government introduced educational programmes for care workers in the field of dementia care. In addition, educational programmes for medical doctors, managers of facilities/service centres for people with dementia, medical professionals working in hospitals, pharmacists, and dentists are currently provided under the government’s policies.

Decentralisation of long-term care in the Netherlands: the case of day care at green care farms for people with dementia

2013 ◽  
Vol 35 (4) ◽  
pp. 704-724 ◽  
Author(s):  
STÉPHANIE J. M. NOWAK ◽  
CLAUDIA C. M. MOLEMA ◽  
CAROLINE A. BAAN ◽  
SIMON J. OOSTING ◽  
LENNEKE VAANDRAGER ◽  
...  
Keyword(s):  
The Netherlands ◽  
Day Care ◽  
Central Government ◽  
Municipal Services ◽  
Term Care ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Green Care Farms

ABSTRACTResponsibility for health and social care services is being delegated from central to local authorities in an increasing number of countries. In the Netherlands, the planned transfer of responsibility for day care for people with dementia from the central government to municipalities is a case in point. The impacts of this decentralisation process for innovative care concepts such as day care at green care farms are largely unknown. We therefore interviewed representatives of municipalities and green care farms to explore what consequences they expected of decentralisation for their organisations and people with dementia. Our study shows that communication and collaboration between municipalities and green care farms is relatively limited. Consequently, municipalities are insufficiently aware of how green care farms can help them to perform their new tasks and green care farmers know little about what municipalities expect from them in the new situation. We therefore recommend that municipalities and green care farms keep each other informed about their responsibilities, duties and activities to ensure a tailored package of future municipal services for people with dementia.

scholarly journals A Qualitative 5-Country Comparison of the Perceived Impacts of COVID-19 on People Living with Dementia and Unpaid Carers

2021 ◽  
Author(s):  
Clarissa Giebel ◽  
Katarzyna Lion ◽  
Maria Mackowiak ◽  
Rabih Chattat ◽  
PN Suresh Kumar ◽  
...  
Keyword(s):  
Public Health ◽  
Physical Health ◽  
Support Services ◽  
Public Health Problem ◽  
Emotional Impact ◽  
Global Public Health ◽  
Global Comparison ◽  
People With Dementia ◽  
Informal Carers ◽  
The Uk

Abstract Background Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. Methods Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. Results Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. Conclusions The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

scholarly journals A cross-country comparison of family carers experiences with residential aged care facilities during the COVID-19 pandemic

2021 ◽  
Vol 33 (S1) ◽  
pp. 26-26
Author(s):  
Katarzyna M Lion ◽  
Clarissa Giebel ◽  
Ilaria Chirico ◽  
Monica Cations ◽  
Rabih Chattat ◽  
...  
Keyword(s):  
Thematic Analysis ◽  
Aged Care ◽  
Care Quality ◽  
Residential Aged Care ◽  
Care Provision ◽  
Family Carers ◽  
Country Comparison ◽  
People With Dementia ◽  
Cross Country ◽  
The Uk

Background:The number of research projects into residential aged care (RAC) during the COVID-19 pandemic is increasing, however there are limited data on the cross-country comparison of experiences residents living with dementia and their families. Our study aimed to 1) give an overview of the RAC restrictions and changes (visiting policy, governmental & health authorities’ advice, service delivery) implemented during the pandemic in Australia, Italy and the UK and 2) and their impact on people with dementia in RAC facilities and their families.Methods:A total of 56 informal family carers of people with dementia residing in RAC took part in semi- structured interviews over the telephone or via Skype in Australia (n=6), Italy (n=25) and the UK (n=26) between July 2020 and March 2021. The interviews were recorded and translated verbatim. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites.Results:Inductive thematic analysis identified four overarching themes: 1) Adaptations implemented in RAC facilities due to the COVID-19 pandemic in Australia, Italy and the UK; 2) means of communication between RAC facility personnel, people with dementia living in RAC and family members; 3) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on people with dementia in RAC facilities and 4) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on families of people with dementia in RAC facilities. While differences between countries and facilities were identified, the restrictions and changes within the residential care system impacted families’ well-being, increased their worries about care quality and safety of people with dementia. The consequences of a lack or modified services for people with dementia included noticeable physical and mental health changes. Although the majority of the facilities implemented some form of video-communication between families and residents, those solutions were unable to replace face-to-face contact.Conclusions:These findings demonstrate the need for implementing safe solutions which might facilitate more frequent in-person contact between families and residents with dementia preventing consequences in mental and physical health in both groups.

scholarly journals NATURE-BASED DEMENTIA CARE: INNOVATIVE ADULT DAY SERVICES FOR PEOPLE WITH DEMENTIA IN THE NETHERLANDS

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 372-373
Author(s):  
S R de Bruin ◽  
Y Buist ◽  
L Vaandrager ◽  
J Hassink
Keyword(s):  
The Netherlands ◽  
Dementia Care ◽  
Adult Day Services ◽  
People With Dementia ◽  
Day Services

Framing outcomes of post-diagnostic psychosocial interventions in dementia: the Adaptation-Coping Model and adjusting to change

2017 ◽  
Vol 21 (1) ◽  
pp. 13-21 ◽  
Author(s):  
Dawn Brooker ◽  
Rose-Marie Dröes ◽  
Shirley Evans
Keyword(s):  
The Netherlands ◽  
Focus Groups ◽  
Local Community ◽  
Service Providers ◽  
Psychosocial Support ◽  
Content Type ◽  
People With Dementia ◽  
English Speaking ◽  
Coping Model ◽  
The Uk

Purpose The purpose of this paper is to describe the Adaptation-Coping Model developed by Dröes in the Netherlands to frame the process of optimal adjustment for people diagnosed with dementia. This model is not well-known in English-speaking countries, but appears to have much to offer practitioners and researchers. As part of a large EU research project (MeetingDem) the authors translated and utilised this model in piloting the Dutch Meeting Centre Support Programme in the UK. This is a local community place-based approach to post-diagnostic psychosocial support. It is aimed at people diagnosed with dementia alongside their families and has proven benefits. Design/methodology/approach The Adaptation-Coping Model underpins the support provided by the Meeting Centre Programme. The model and its translation into the UK context are described. Focus groups were undertaken with people living with dementia (n=9) and family carers (n=6) at the UK Meeting Centre pilot. Examples from these focus groups are provided in order to illustrate different aspects of the model. Findings The translated Adaptation-Coping (adjusting to change) Model provides a way for service users (people with dementia and families) to conceptualise their journey with dementia post-diagnosis, and potentially provides service providers and researchers with aims for treatment and support. Research limitations/implications These are initial observations based on a UK pilot service. Originality/value Ways of conceptualising psychosocial support for people living with dementia often do not get translated between countries. This model has been successfully utilised within the Netherlands for many years. This paper highlights the opportunity to build on this in English-speaking countries.

scholarly journals Exposure to nature gardens has time-dependent associations with mood improvements for people with mid- and late-stage dementia: Innovative practice

Dementia ◽  
2017 ◽  
Vol 17 (5) ◽  
pp. 627-634 ◽  
Author(s):  
Piran CL White ◽  
Jonathan Wyatt ◽  
Garuth Chalfont ◽  
J Martin Bland ◽  
Christopher Neale ◽  
...  
Keyword(s):  
Late Stage ◽  
Green Space ◽  
Potential Role ◽  
Care Facility ◽  
Dementia Care ◽  
Time Dependent ◽  
People With Dementia ◽  
Care Facilities ◽  
Outdoor Space ◽  
The Uk

Exposure to green space and nature has a potential role to play in the care of people with dementia, with possible benefits including improved mood and slower disease progression. In this observational study at a dementia care facility in the UK, we used carer-assessed measures to evaluate change in mood of residents with mid- to late-stage dementia following exposure to a nature garden. We found that exposure to nature was associated with a beneficial change in patient mood. There was a non-linear relationship between time spent outdoors and mood outcome. Improvements in patient mood were associated with relatively short duration exposures to nature, and no additional measureable increases in mood were found with exposures beyond 80–90 minutes duration. Whilst further investigation is required before causality can be determined, these results raise important questions for policy about the integration of outdoor space into the design of dementia care facilities and programmes.

Moving towards culturally competent dementia care: have we been barking up the wrong tree?

2005 ◽  
Vol 15 (1) ◽  
pp. 39-46 ◽  
Author(s):  
Jenny Mackenzie ◽  
Ruth Bartlett ◽  
Murna Downs
Keyword(s):  
Service Providers ◽  
Evidence Base ◽  
Culturally Competent ◽  
Ethnic Communities ◽  
Cultural Groups ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Uk ◽  
Minority Ethnic

In the UK it is established that health and social care services for people with dementia from black and minority ethnic communities need to move towards providing evidence-based culturally appropriate care. At present, however, the evidence base available to guide professionals working with people with dementia from diverse ethnic and cultural groups is limited, and beliefs about dementia and the type of treatment and support needed have received little attention. Consequently this creates problems for service providers faced with appropriately supporting people with dementia and their families from black and minority ethnic communities.

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