Access to community care for people with dementia and their informal carers

Bieber, Anja; Stephan, Astrid; Verbeek, Hilde; Verhey, Frans R.J.; Kerpershoek, Liselot; Wolfs, Claire; Vugt, Marjolein de; Woods, Bob; Røsvik, Janne; Selbæk, Geir; Sjölund, Britt-Marie; Wimo, Anders; Hopper, Louise; Irving, Kate; Marques, Maria J.; Gonçalves-Pereira, Manuel; Portolani, Elisa; Zanetti, Orazio; Meyer, Gabriele

doi:10.1007/s00391-017-1266-7

Cited by 27 publications

(20 citation statements)

References 28 publications

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“…The study indicated that regardless of the health and social care service in the different countries, people living in the mild to moderate phase of dementia receive little attention and interventions. Moreover, another recent study conducted by Bieber et. al (2017) showed that across Europe, informal carers are mainly pro-active in seeking formal care on behalf of people with dementia, while GP are described as the most important profession supporting the access to formal care.…”

Section: Conclusion and Discussionmentioning

confidence: 96%

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries

Szczęśniak

Dröes

Meiland

et al. 2018

Int. Psychogeriatr.

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Section: Conclusion and Discussionmentioning

confidence: 96%

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries

Szczęśniak

Dröes

Meiland

et al. 2018

Int. Psychogeriatr.

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“…As such, opportunities to offer support are especially valuable upon diagnosis. While social support is recognised within the United Kingdom's (UK) local and national policies (Department of Health, ; DHSSPSNI, ), there is sometimes a fragmented approach to dealing with diagnosed individuals’ social needs, with informal carers, rather than professionals, feeling they take the lead (Bieber et al, ). This article's purpose, then, is to investigate experiences of individuals recently diagnosed with dementia in Northern Ireland (NI) regarding how they were signposted on to social support.…”

Section: Introductionmentioning

confidence: 99%

What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan

2020

Health Soc Care Community

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The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory approach, semi‐structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience of diagnosis and also their subsequent group membership. Respondents reported both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between a medical professional and referral to the empowerment group, others being referred by other health professionals or dementia navigators. The study indicates that, due to disorienting feelings, one diagnostic consultation is insufficient to explain both the diagnosis and offer follow‐up support. Therefore, more explicit links to navigators or other services need to be made at the point of diagnosis to prioritise information regarding opportunities for social engagement for those being diagnosed.

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“…This interview study is part of the larger Actifcare study (Kerpershoek et al, ) which comprises of several work packages (see Figure ) in which access to and the use of formal care was explored in eight European countries (the Netherlands (NL), Germany (DE), United Kingdom (UK), Ireland (IE), Sweden (SE), Norway (NO), Portugal (PT), Italy (IT)). A mapping system was used to provide an overview of the structures and services for those with dementia (Bieber et al, ). A range of 29 different services for people with dementia and their carers were identified and compared across the countries (Kerpershoek et al, ).…”

Section: Introductionmentioning

confidence: 99%

“…Importantly, not all countries have post‐diagnostic pathways. Existing pathways are described in detail in a different Actifcare paper (Bieber et al, ).…”

Section: Introductionmentioning

confidence: 99%

Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study

Kerpershoek

Wolfs

Verhey

et al. 2019

Health Soc Care Community

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This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care‐giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision‐making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

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Access to community care for people with dementia and their informal carers

Cited by 27 publications

References 28 publications

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries

What next? Experiences of social support and signposting after a diagnosis of dementia

Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study

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