Dementia
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Published By Sage Publications

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Dementia ◽  
2022 ◽  
pp. 147130122110539
Author(s):  
Kamilla Kielsgaard ◽  
Pernille Tanggaard Andersen ◽  
Sissel Horghagen ◽  
Dorthe Nielsen ◽  
Mette Hartvig Hansen ◽  
...  

Introduction Engagement in meaningful everyday life occupations is linked to well-being. However, people with dementia are often deprived of engagement. As a response, a Danish Dementia Town was established with the intention of transforming care services to improve opportunities for meaningful engagement. The evidence-based The meaningful occupational engagement intervention for people with dementia (MOED) intervention was developed and implemented in dementia town to enhance meaningful occupational engagement. The purpose of this paper is to evaluate the content, impact and implementation process of MOED. Method To evaluate MOED, we applied a program theory-based qualitative approach, building on participant observations and informal conversations with people with dementia ( n = 7) and staff ( n = 9). Data were analysed from a hermeneutic approach to gain an in-depth understanding of how MOED influenced meaningful occupational engagement and to evaluate the implementation process. Findings The main theme ‘Engagement in meaningful occupations – a conditional and fragile process’ emerged along with three subthemes: ‘Creating an everyday space of meaning: Conditions of the intervention’, ‘Occupational engagement as an opportunity to blossom: Impact of the intervention’ and ‘Professional identity, culture and reflections: Contextual barriers to changes to working practice’. Together, the subthemes illustrate how engagement in meaningful occupations arose. However, opportunities to engage in meaningful occupations were fragile, as they depended on various factors within the context. Conclusion Engagement in meaningful occupations emerged when MOED was applied in accordance with the program theory, as it seemed to create spaces where people with dementia could engage in meaningful occupations and they could blossom over time. However, MOED was only partially implemented in accordance with the developed program theory, as several contextual barriers influenced the sustainability of the intervention. MOED showed potential to support improvement in dementia care activity programmes to enhance opportunities to engage in meaningful occupations in everyday life for people living with dementia.


Dementia ◽  
2022 ◽  
pp. 147130122110653
Author(s):  
Isaac A Adedeji ◽  
Adesola Ogunniyi ◽  
David C Henderson ◽  
Nadia A Sam-Agudu

Background The increasing awareness and diagnosis of dementia in Africa necessitate documentation of caregiving practices to understand local patterns and improve the quality of care. Caregiving in African communities is rooted in informal-communal social organization. This scoping review analyses caregiver characteristics and experiences, and practices of caregiving for persons living with dementia in Africa. Methods A total of 152 references were retrieved, with 64 references obtained from PubMed, 85 from AJOL, and three from Scopus. Based on the relevance of titles, 83 references were further retained from PubMed (64), AJOL (16), and Scopus (3). A rapid review of abstracts was done in Distiller SR, and finally, six relevant articles were content-analyzed using Atlas ti 8.4 qualitative analysis software. Results All six included studies were published between 2003 and 2018. Four themes were identified: article characteristics, caregiver characteristics, caregiver in context, and caregiver potentialities (challenges and opportunities). Studies reported findings from research conducted in four African countries: three from Nigeria, and one each from South Africa, Egypt, and Tanzania. Caregivers of persons living with dementia typically had eight years or less of formal education, were unpaid, and spent a daily average of 13 hours in caregiving. Cultural thresholds and individual caregiver differences underlie the interpretation of stressors across cultures. Caregivers lack the right training and information as well as support systems to improve their role performance and reduce accumulated stress. Conclusion In African countries, informational and educational platforms are essential for improved individual dementia caregiving, vis-à-vis strengthened roles of governments, and religious/traditional leaders and organizations.


Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.


Dementia ◽  
2021 ◽  
pp. 147130122110424
Author(s):  
Kathryn Lord ◽  
Daniel Kelleher ◽  
Margaret Ogden ◽  
Clare Mason ◽  
Penny Rapaport ◽  
...  

Background and objectives We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods Over October 2019–March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. Results Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. Discussion and implications We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.


Dementia ◽  
2021 ◽  
pp. 147130122110647
Author(s):  
Rosalie Ashworth ◽  
Zoe Bassett ◽  
Jake Webb ◽  
Sharon Savage

Background and Objectives Due to the concern over global rising rates of dementia, increased emphasis has been placed on understanding and moulding the public’s knowledge and awareness of the condition. There has been limited previous research into predictors of dementia knowledge; overall knowledge amongst the public is low, and it has been widely agreed that more needs to be done to raise awareness of this condition. This study seeks to solidify understanding of public dementia knowledge and introduces dementia worry, motivation to seek information and risk perception as novel concomitants of this knowledge. Research Design and Methods A convenience sample of 311 UK adults completed a survey on dementia knowledge including Alzheimer’s disease-specific questions, worry about developing dementia, motivation to seek information and perceived personal risk of getting the disease. Surveys were completed face-to-face and included both closed and open-ended questions. Results Overall dementia knowledge scores were low, achieving an average of 33% of the total possible score, with 88% of the sample scoring below 50%. Bivariate correlations were performed between dementia knowledge and key variables, revealing significant positive relationships with risk perception ( r = 0.179, p = .002), worry ( r = 0.140, p = .016) and motivation to seek information ( r = 0.139, p = .016). When knowledge was dichotomised into high and low, worry about ( p = .28) and perceived risk ( p = .19) of dementia was significantly lower for people with low knowledge scores than for people with higher dementia knowledge scores. Motivation to seek information was not significantly different between the high and low knowledge groups ( p = .071). Discussion and Implications Despite the relatively low knowledge scores, findings show a positive relationship between modifiable factors and dementia knowledge, suggesting areas to consider for both further research and publication campaigns. Further implications and limitations of this study are discussed.


Dementia ◽  
2021 ◽  
pp. 147130122110653
Author(s):  
Noelannah Neubauer ◽  
Christa Spenrath ◽  
Serrina Philip ◽  
Christine Daum ◽  
Lili Liu ◽  
...  

A growing number of Canadians live with dementia. Strategies to reduce the risks of getting lost include physical barriers, restraints and medications. However, these strategies can restrict one’s participation in meaningful activities and reduce quality of life. Locator devices can be used to manage safety risks while also supporting engagement and independence among persons living with dementia. As more locator devices become available on the market, adoption rates would be affected by certain factors. There is no clear, standardized approach to identify the factors that have an influence on the acceptance and usability of locator devices for persons with dementia and their care partners. This project aimed to identify factors related to acceptance and usability of locator devices that are important to individuals with dementia, their care partners, service providers and technology developers. Qualitative description and conventional content analysis guided our approach. We conducted 5 focus groups with 21 participants. Trustworthiness strategies included multiple data sources, data verification for accuracy and peer debrief. Five overarching factors emerged as critical aspects in the acceptance and usability of locator devices. These factors were inclusivity, simplicity, features, physical properties and ethics. Participants thought that locator devices do not adequately consider privacy and stigma. Therefore, the acceptance and usability of locator devices could be enhanced if privacy and stigma are addressed. The factors identified will inform the creation of an acceptance and usability scale for locator devices used by persons living with dementia, their care partners and service providers.


Dementia ◽  
2021 ◽  
pp. 147130122110620
Author(s):  
Ganesan Niranjana ◽  
Gopalakrishnan Bhuvaneswari

Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening

Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.


Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Elin Nilsson

The general approach to a life with dementia is negatively charged, and alternative views are rarely found in research or in media coverage. This case-study explores conversational practices for framing dementia in a more positive light, employed by a husband of a wife with dementia. Framing regards the structured experiences of dementia, drawing on Goffman’s ‘Frame Analysis’. Benefitting from conversation analysis, this article presents principal results of four conversational practices used by the spouse without dementia: mitigating trouble, normalising trouble, justifying trouble, and praising. The conclusions drawn are that the practices contribute to the challenging of the dominant negative framework of the dementia experience, as they facilitate talk which emphasises the wife with dementia’s positive progression and skills in managing the household chores. Despite a positive framing of dementia, this couple still embed their talk in the overall negative framework of loss and decreased cognitive competence. The visualisation of a positive framing could add to a broadened view of dementia, which in turn could contribute to greater well-being for those affected. However, the results may also imply a risk of one spouse’s conversational practices of normalising and mitigating trouble being dominant in interaction and thereby neglecting the other spouse’s experience of the situation.


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