scholarly journals How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings

2014 ◽  
Vol 26 (11) ◽  
pp. 1849-1862 ◽  
Author(s):  
Annika Taghizadeh Larsson ◽  
Johannes H. Österholm
Keyword(s):  
Social Services ◽  
Knowledge Production ◽  
Integrative Approach ◽  
Qualitative Synthesis ◽  
Care Services ◽  
People With Dementia ◽  
The Family ◽  
Legislative Changes ◽  
Person With Dementia ◽  
Academic Search

ABSTRACTBackground:During recent decades, there has been a growing recognition that people cannot be assumed incapable of making decisions about their own care solely on the basis of a dementia diagnosis and international agreements and legislative changes have strengthened the formal right for people with dementia to participate in decisions on care services. This raises important questions about how these decisions are currently made and experiencedin practice. In this review, we address this question and highlight directions for further research.Methods:We searched CINAHL, PsycINFO, ASSIA, Social Services Abstracts, Science Direct, Academic Search Premier, and PubMed. Twenty-four pertinent articles were identified, all representing qualitative studies. Relevant findings were extracted and synthesized along dimensions of involvement of the person with dementia in decisions on care services, using an integrative approach to qualitative synthesis.Results:We identified three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions:excluded, prior preferences taken into account, andcurrent preferences respected.Several (10) articles seemed to be based on the assumption that decisions on care services are invariably and solely made within the family and without participation of the person with dementia.Conclusions:The review emphasizes the need for more updated research about international debates and agreements concerning capabilities and rights of people with dementia and about the (potential) formal contexts of care decisions in the country concerned. This, we argue, is vital for future knowledge production in the area.

scholarly journals Carers’ experiences of timely access to and use of dementia care services in eight European countries

2019 ◽  
pp. 1-18 ◽  
Author(s):  
Hannah Jelley ◽  
Liselot Kerpershoek ◽  
Frans Verhey ◽  
Claire Wolfs ◽  
Marjolein de Vugt ◽  
...  
Keyword(s):  
Service Use ◽  
Study Participant ◽  
Formal Care ◽  
Structured Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Timely Access ◽  
Mixed Feelings ◽  
Barriers To Service ◽  
Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

scholarly journals The family accompaniment of persons with dementia seen through the lens of the capability approach

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 55-79 ◽  
Author(s):  
Catherine Le Galès ◽  
Martine Bungener
Keyword(s):  
Capability Approach ◽  
Family Members ◽  
The Past ◽  
People With Dementia ◽  
The Social ◽  
The Family ◽  
And Gender ◽  
Person With Dementia ◽  
The Capability Approach

Using the capability approach initially developed by A Sen as a theoretical framework, this paper analyses both what people with dementia and their families do in response to difficulties in their daily life brought about by the disease, and the reasons they give for acting as they do. Individual and collective interviews and ethnographic observations with 15 persons with dementia and one or more of their family members were conducted. Follow-up interviews were possible for nine families. Results highlight a great diversity in ways of doing things and in accompaniment by family members. Daily adjustments are often hidden or minimized, at least at the onset of the dementia. Later, they become more frequent, repetitive and indispensable but remain influenced by the social and gender roles that existed prior to the illness. The inventiveness of families, in a context marked by various kinds of constraints, is primarily motivated by their desire to maintain the apparently intact abilities of the person with dementia but especially to preserve forms of liberty and what counted for the person, what that person valued before the disease. There are some ways of living with dementia, even when accompanied, which may long remain preferable to others, which better answer to the past and present aspirations of persons with dementia and the purposes of the accompanying persons. It is thus essential that health professionals, as well as society in general, recognize and address this issue.

scholarly journals ‘And so I took up residence’: The experiences of family members of people with dementia during admission to an acute hospital unit

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 36-54 ◽  
Author(s):  
Kay de Vries ◽  
Jenny Drury-Ruddlesden ◽  
Chris Gaul
Keyword(s):  
New Zealand ◽  
Family Members ◽  
Acute Hospital ◽  
Hospital Unit ◽  
People With Dementia ◽  
The Family ◽  
Hospital Beds ◽  
Acute Hospital Admission ◽  
Primary Focus ◽  
Person With Dementia

It is estimated that a quarter of acute hospital beds are in use by older people with dementia at any one time. Little empirical research has been carried out that has specifically examined the day-to-day input of family members into the care of people with dementia during an acute hospital admission. In this article, we present the results of analysis of interviews with 26 family members of people with dementia about their experiences of supporting an admission of a person with dementia to an acute hospital unit in New Zealand. For all family members, the desire to support the person with dementia during their admission was at the forefront and was their primary focus. The theme, ‘And so I took up residence’, exemplifies fully the experiences of all of the family member participants. This study provides evidence that family members are a resource that may be unrecognised, untapped and unsupported in the event of hospitalisation of people with dementia.

Autobiographical occasions in assessment meetings involving persons with dementia

2016 ◽  
Vol 17 (1) ◽  
pp. 41-64 ◽  
Author(s):  
JH Österholm ◽  
L-C Hydén
Keyword(s):  
Life Stories ◽  
Sense Of Self ◽  
Strong Connection ◽  
Care Services ◽  
Care Managers ◽  
People With Dementia ◽  
Everyday Work ◽  
Individualize Care ◽  
Institutional Contexts ◽  
Person With Dementia

It has often been argued that identities have a strong connection to stories and storytelling and thus that life stories should be used to individualize care for people with dementia. A problem with this view is that storytellers are seen as individuals, freely reflecting on, composing, and telling life stories. This view becomes especially problematic when persons with dementia tell stories in institutional contexts where certain information is requested and necessary for decision-making. The aim of this study is to investigate how autobiographical stories are used and what functions they have in assessment meetings involving persons with dementia. Fifteen assessment meetings were audio-recorded and transcribed. Narratives were extracted and analyzed by coding who the narrator or narrators were, what the narrator(s) accomplished by telling this story, and what the consequences were for the ongoing meeting. It was found that all interlocutors told stories about the person with dementia. These stories were found to have three functions: (1) to justify why care services were needed; (2) to describe experiences about previous care; and (3) to provide a good working climate. Thus, not all autobiographical stories are the person's story. For care managers in their everyday work it is important to be aware of this and not only be satisfied with a story that suits the organization's needs. Furthermore, stories told in assessment meetings often positioned the person as dependent on others, which could undermine the identity and sense of self of the person with dementia.

scholarly journals Maintaining Social Connections in Dementia: A Qualitative Synthesis

2019 ◽  
Vol 30 (1) ◽  
pp. 23-42 ◽  
Author(s):  
Linda Birt ◽  
Rebecca Griffiths ◽  
Georgina Charlesworth ◽  
Paul Higgs ◽  
Martin Orrell ◽  
...  
Keyword(s):  
Social Interactions ◽  
Impression Management ◽  
Short Term Memory ◽  
Clinical Symptoms ◽  
Social Connections ◽  
Social Self ◽  
Qualitative Synthesis ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Person With Dementia

The clinical symptoms of dementia include difficulty with speech, poor short-term memory, and changes in behavior. These symptoms can affect how the person with dementia understands and performs in social interactions. This qualitative review investigated how people with mild to moderate dementia managed social connections. A systematic search of social science databases retrieved 13 articles; data were synthesized using thematic analysis. Results established the work undertaken by people with dementia to maintain and present a social persona seen as socially acceptable. Interpretations are contextualized within Goffman and Sabat’s theories on “self.” People with dementia were agentic in impression management: undertaking work to maintain recognized social roles, while being aware of when their illness led to others discrediting them. Wider recognition of strategies used to maintain a social self could inform interventions designed to increase capability and confidence in co-managing social connections following dementia diagnosis.

scholarly journals Utilization of Formal and Informal Care by Community-Living People with Dementia: A Comparative Study between Sweden and Italy

2018 ◽  
Vol 15 (12) ◽  
pp. 2679 ◽  
Author(s):  
Carlos Chiatti ◽  
Danae Rodríguez Gatta ◽  
Agneta Malmgren Fänge ◽  
Valerio Scandali ◽  
Filippo Masera ◽  
...  
Keyword(s):  
Social Services ◽  
Informal Care ◽  
Informal Caregivers ◽  
Bivariate Analysis ◽  
Formal Care ◽  
Living Situation ◽  
Factors Associated ◽  
Care Services ◽  
People With Dementia ◽  
Care Support

Background: Dementia is a public health priority with a dramatic social and economic impact on people with dementia (PwD), their caregivers and societies. The aim of this study was to contribute to the knowledge on how utilization of formal and informal care varies between Sweden and Italy. Methods: Data were retrieved from two trials: TECH@HOME (Sweden) and UP-TECH (Italy). The sample consisted of 89 Swedish and 317 Italian dyads (PwD and caregivers). Using bivariate analysis, we compared demographic characteristics and informal resource utilization. Multiple linear regression was performed to analyze factors associated with time spent on care by the informal caregivers. Results: Swedish participants utilized more frequently health care and social services. Informal caregivers in Italy spent more time in caregiving than the Swedish ones (6.3 and 3.7 h per day, respectively). Factors associated with an increased time were country of origin, PwD level of dependency, living situation, use of formal care services and occupation. Conclusions: Care and service utilization significantly varies between Sweden and Italy. The level of formal care support received by the caregivers has a significant impact on time spent on informal care. Knowledge on the factors triggering formal care resources utilization by PwD and their caregivers might further support care services planning and delivery across different countries.

scholarly journals 473 - Post-diagnostic Dyadic Intervention for People with Dementia and their Family Carers

2020 ◽  
Vol 32 (S1) ◽  
pp. 195-195
Author(s):  
Marleen Prins ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Psychosocial Support ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Emotional Impact ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
The Family ◽  
The Future ◽  
Person With Dementia

Background and objectives Support directly after the diagnosis is often experiences as inadequate by people with dementia and their family carers. In this phase, appropriate psychosocial support is important to adapt to and cope with the dementia diagnosis. Often, available support is focused on practical matters and not on the emotional impact of the diagnosis. Also, very often problems have already started to accumulate before support is provided. In the US, the intervention SHARE [Support, Health, Activities, Resources, Education] was therefore developed and studied. This intervention is innovative, because it is designed for dyads (e.g., the person with dementia and their family carer) dealing with early-stage dementia. Its’ primary goal is to enhance communication between people with dementia and their family carers and to prepare them for the future. Several years ago, the intervention was adjusted and pilot -tested in the Netherlands, with positive results. This RCT study evaluates the (cost-)effectiveness of the Dutch SHARE intervention.Methods During four or five session and a pre-session, a healthcare psychologist carries out the intervention with dyads dealing with early-stage dementia. This to enhance skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia. The intervention takes place in an early stage when the person with dementia is still able to participate actively and before the family carer is overwhelmed by care-related stress. The primary outcome measurements are the quality of life of the person with dementia and self-efficacy of the family carer. Secondary outcomes are stress, communication in the relationship and perspective taking measured only for family carers. The design and procedures of the RCT will be presented in this session as well as the content of the intervention and demographic characteristics of participating dyads.Conclusion This intervention increases the ability of the dyad to cope with the disease and capacity to deal with the situation, with positive experiences of participating dyads and professionals. The study enhances knowledge about psychosocial interventions for people with dementia and family carer

A comprehensive approach of the determinants of use of care in dementia: the Recaredem (recourse to care in dementia) cross-sectional study

2018 ◽  
Vol 31 (07) ◽  
pp. 1027-1037
Author(s):  
Laetitia Rullier ◽  
Céline Meillon ◽  
Valérie Bergua ◽  
Clément Pimouguet ◽  
Magali Gonzalez-Colaço Harmand ◽  
...  
Keyword(s):  
Health Services ◽  
Secondary Care ◽  
Logistic Models ◽  
Population Based ◽  
Cross Sectional Study ◽  
Integrative Approach ◽  
Cross Sectional ◽  
Care Services ◽  
People With Dementia ◽  
Community Area

ABSTRACTBackground:Given the rate of the undiagnosed cases of dementia and the consequences of inappropriate care, understanding the factors that explain the use of medical and health care in dementia is a critical concern. Our objective was to identify the psychosocial and medical determinants of use of care in dementia.Methods:The study sample consisted of 308 participants: the persons with dementia (n = 99) selected from three French population-based cohorts (i.e. PAQUID, 3C, AMI), their family caregivers (primary, n = 96, and secondary, n = 51), and their general practitioners (n = 62). Use of care in dementia was considered according to two indicators: (1) recourse to secondary care, (2) number of community and health services used.Results:Multiple logistic models including sociodemographics and psychosocial variables revealed that the determinants of nonuse of care are similar both for the recourse to secondary care and for the number of community and health services used: lack of education and the contribution of the people with dementia to the decisions regarding their own care and dementia care services in the community area. In addition, satisfaction of the primary caregiver with the services used by his/her relative is associated with non-recourse to secondary care.Conclusions:Taken together, these results highlight the predominant role of psychosocial factors in the use of care in dementia and the importance of addressing this issue through an integrative approach including psychological, social, medical, and family dimensions.

scholarly journals Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

2021 ◽  
Vol 18 (2) ◽  
pp. 686
Author(s):  
Clarissa Giebel ◽  
Caroline Sutcliffe ◽  
Frances Darlington-Pollock ◽  
Mark A. Green ◽  
Asan Akpan ◽  
...  
Keyword(s):  
Social Care ◽  
Late Onset ◽  
Care Pathways ◽  
Family Carer ◽  
Family Carers ◽  
North West ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

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