This case study describes the development of new resources to support families and staff caring for people living with dementia. To overcome the challenge of high staff turnover and the impact on behavioural and psychological symptoms of dementia (BPSD) and social isolation, the Northern Health and Social Care Trust Dementia Home Support Team developed life story posters and therapeutic letters...
(Edited publisher abstract)
This case study describes the development of new resources to support families and staff caring for people living with dementia. To overcome the challenge of high staff turnover and the impact on behavioural and psychological symptoms of dementia (BPSD) and social isolation, the Northern Health and Social Care Trust Dementia Home Support Team developed life story posters and therapeutic letters that provided information about the person. This supported a greater understanding of how their condition might manifest itself, but also supported engagement with the person with dementia that would reduce their social isolation. In terms of training, the team switched to virtual delivery and reduced class sizes to a maximum of 24 participants. They made use of breakout rooms and developed videos and animations to support training. Together, these changes overcame the reduction in engagement that has been seen when education and training programmes have shifted to online delivery. Recognising the time demands on carers and staff, the team also reduced the size of training modules, and developed an app that could be used to support learning after the training had been completed. Advice on psychological wellbeing for staff was added to training. This approach generated the following benefits and outcomes: reduction in hospital admissions; 50 per cent reduction demand for the specialist dementia team after one year; £94,848 saving in staff time in the first year; improved experience for people with dementia and care professionals.
(Edited publisher abstract)
Subject terms:
dementia, social isolation, loneliness, case studies, intervention, evaluation, training;
This discussion paper starts a conversation on what social care reform needs to deliver in order to meet the needs of people with dementia. The paper considers evidence from legislation, guidance, standards and frameworks that define quality care or drive improvement, from leading bodies across the social care sector. It also examines evidence from research hubs such as the Alzheimer’s Society...
(Edited publisher abstract)
This discussion paper starts a conversation on what social care reform needs to deliver in order to meet the needs of people with dementia. The paper considers evidence from legislation, guidance, standards and frameworks that define quality care or drive improvement, from leading bodies across the social care sector. It also examines evidence from research hubs such as the Alzheimer’s Society Centres of Excellence, to understand the hallmarks of quality care, and how social care can best be delivered. It looks at personalised care, what ‘living well’ means for people with dementia, and the importance of social connections. It also considers how the social care system needs to be built to enable personalised care. The paper provides the foundation for future work, calling on the Government to set out and consult on a new vison for social care to re-examine the purpose of social care and start a meaningful reform in 2021. The report include specific national and local recommendations for England, Wales and Northern Ireland.
(Edited publisher abstract)
Subject terms:
care reform, dementia, Alzheimers disease, personalisation, person-centred care, quality improvement;
Health Expectations, 24(5), 2021, pp.1879-1889. Online only
Publisher:
Wiley
Background: The term peer researcher describes the role of a person who has similar characteristics and can identify with the participant group in a research study. This paper describes the methodological approach and experiences of older people who were peer researchers on a study that explored the lived experience of people with dementia who lived in technology-enriched housing. Methods: Nine...
(Edited publisher abstract)
Background: The term peer researcher describes the role of a person who has similar characteristics and can identify with the participant group in a research study. This paper describes the methodological approach and experiences of older people who were peer researchers on a study that explored the lived experience of people with dementia who lived in technology-enriched housing. Methods: Nine people responded to a public recruitment campaign through nongovernment organisations using multiple methods such as seniors' forums, development officers and social media. Mandatory training across 2 days was provided and seven peer researchers successfully completed the training. A total of 22 interviews were undertaken by the seven peer researchers. The data collected from the training feedback proforma (N = 7), interview debrief forms (N = 22) and final evaluation forms (N = 5) were analysed using content analysis and triangulated. Results: Five core themes emerged from the data using a content analysis approach to examine the peer researchers' experience: (1) skill development; (2) recognition of competencies; (3) connection; (4) supplementary information; and (5) the triad dynamic. Conclusions: Considerations to enhance the peer researcher experience emerged including enhanced communication training, consideration of the optimum number of peer researchers to balance workload and identification of the characteristics that enable people to connect as peer researchers. Future research should consider the impact that experiential skill development has on the data collected. Public Contribution: Older people conducted qualitative interviews as peer researchers with people living with dementia to cocreate knowledge.
(Edited publisher abstract)
Subject terms:
participatory research, peer support, older people, user participation, user views, dementia, assistive technology, research methods;
Dementia: the International Journal of Social Research and Practice, 20(7), 2021, pp.2362-2379.
Publisher:
Sage
Dominant messages about the capabilities of those with dementia post-diagnosis are often dehumanising and focused on mental declines. Additionally, carers for those with dementia are more likely to be involved in consultations and enquiries about the condition. This study helps to challenge stigmatising cultural messages by reporting upon the experiences of 13 adults diagnosed with early-stage...
(Edited publisher abstract)
Dominant messages about the capabilities of those with dementia post-diagnosis are often dehumanising and focused on mental declines. Additionally, carers for those with dementia are more likely to be involved in consultations and enquiries about the condition. This study helps to challenge stigmatising cultural messages by reporting upon the experiences of 13 adults diagnosed with early-stage dementia and how their involvement with empowerment groups in Northern Ireland has led to their involvement in consultations with policy makers and educational opportunities with the wider public. The study finds that this not only helps in challenging stereotypical ideas about dementia, as well as informing others, but also gives a sense of purpose to adults in their post-diagnosis lives. It is further noted that group identity helps give confidence and amplifies the voice of those who take part, allowing members to adopt a shared narrative and learn from each other.
(Edited publisher abstract)
Subject terms:
empowerment, stigma, dementia, stereotyped attitudes, user participation, groups, group therapy;
COMMISSIONER FOR OLDER PEOPLE FOR NORTHERN IRELAND
Publisher:
Commissioner for Older People for Northern Ireland
Publication year:
2020
Pagination:
28
Place of publication:
Belfast
This report summarises responses received from the Relevant Authorities to the recommendations made following the investigation into Dunmurry Manor Care Home in Belfast. The recommendations aimed to address the serious and systemic failures that had permitted inhuman and degrading treatment of older people. It presents responses under the nine themes of: Safeguarding and human rights; Care and treatment; Medicines management; The environment and environmental cleanliness; Regulation and inspection; Staff skills, training and development; Management and leadership; Complaints and communication; and Accountability and governance. Whilst the majority of the recommendations from the report ‘Home Truths’ have been accepted, the Commissioner is frustrated at the pace of change. The Commissioner particularly highlights continuing concerns about the effectiveness of the handling of complaints at local and regional level.
(Edited publisher abstract)
This report summarises responses received from the Relevant Authorities to the recommendations made following the investigation into Dunmurry Manor Care Home in Belfast. The recommendations aimed to address the serious and systemic failures that had permitted inhuman and degrading treatment of older people. It presents responses under the nine themes of: Safeguarding and human rights; Care and treatment; Medicines management; The environment and environmental cleanliness; Regulation and inspection; Staff skills, training and development; Management and leadership; Complaints and communication; and Accountability and governance. Whilst the majority of the recommendations from the report ‘Home Truths’ have been accepted, the Commissioner is frustrated at the pace of change. The Commissioner particularly highlights continuing concerns about the effectiveness of the handling of complaints at local and regional level.
(Edited publisher abstract)
Subject terms:
care homes, nursing homes, dementia, elder abuse, human rights, investigations, medication, safeguarding adults, complaints procedures;
This guidance has been produced to ensure that the right of people living with dementia to practise and enjoy personal and sexual relationships, if that is their choice, is upheld; and to support those who work with people with a dementia, their partners, carers and families in upholding it. Dealing with relationships and sexuality can be complex and challenging both professionally...
(Edited publisher abstract)
This guidance has been produced to ensure that the right of people living with dementia to practise and enjoy personal and sexual relationships, if that is their choice, is upheld; and to support those who work with people with a dementia, their partners, carers and families in upholding it. Dealing with relationships and sexuality can be complex and challenging both professionally and emotionally as the carer seeks to balance rights, manage expectations and responsibilities and ensure that all parties are protected. The guidance covers: principles and values; dementia, the brain and sexuality; care in communal settings including hospitals; care in the community; lesbian, gay, bisexual and transgender; information / support to people with dementia, their partners, carers and families; legislation, capacity, consent and safeguarding; staff support and training; and care practice.
(Edited publisher abstract)
Subject terms:
dementia, human rights, sexuality, relationships, safeguarding adults, LGBT people, mental capacity;
Dementia: the International Journal of Social Research and Practice, 19(6), 2020, pp.1974-1996.
Publisher:
Sage
Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents...
(Edited publisher abstract)
Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia Northern Ireland, an organisation initiated and led by people with dementia. This study used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify ‘what works, for whom, under what circumstances’. The analysis used realist logic to build up context-mechanism-outcome configurations. The Dementia Northern Ireland service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The ‘Empowerment Groups’ appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia Northern Ireland illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.
(Edited publisher abstract)
Subject terms:
case studies, empowerment, dementia, decision making, user participation, evaluation, co-production, social inclusion;
Health and Social Care in the Community, 28(4), 2020, pp.1170-1179.
Publisher:
Wiley
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...
(Publisher abstract)
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.
(Publisher abstract)
Subject terms:
dementia, diagnosis, support groups, access to services, service users, empowerment, peer groups, social networks;
HSC Public Health Agency, Research and Development Division
Publication year:
2019
Pagination:
374
Place of publication:
Belfast
This study explores the views of perspectives of people living with dementia (PLWD) who live in person-centred, technology enriched housing schemes, as well as the views of family and paid employees. The report includes the results of a literature review of technology within supported living and residential settings; a technology audit of the housing schemes involved in the study; findings from
(Edited publisher abstract)
This study explores the views of perspectives of people living with dementia (PLWD) who live in person-centred, technology enriched housing schemes, as well as the views of family and paid employees. The report includes the results of a literature review of technology within supported living and residential settings; a technology audit of the housing schemes involved in the study; findings from interviews with tenants, family carers and carer staff; and the results of a survey on the attitudes and formal and informal caregivers towards technology. The findings suggest that TESA do promote independence, dignity and support through person centred care delivery. The results found that not all tenants were aware of the technology provision, but those who were aware of it felt it gave them reassurance and feelings of security. Although technology in the facilities did not appear to impact on decision-making by informal carers during transition, the technologies were valued once the PLWD lived in the TESA facilities. The study also found that technology supported the formal caregiver to provide high quality, person-centred care. A range of recommendations in terms of practice, policy and research are presented as a result of these findings.
(Edited publisher abstract)
Subject terms:
dementia, supported housing, assistive technology, user views, carers, care workers, person-centred care, independence, alarm systems;
Dementia: the International Journal of Social Research and Practice, 18(7-8), 2019, pp.2371-2435.
Publisher:
Sage
Health and social care provision needs to change in order to meet the needs of an increase in the number of people living with dementia. Environmental design, technology and assistive devices have the potential to complement care, help address some of the challenges presented by this growing need and impact on the lived experience of this vulnerable population. This systematic review...
(Edited publisher abstract)
Health and social care provision needs to change in order to meet the needs of an increase in the number of people living with dementia. Environmental design, technology and assistive devices have the potential to complement care, help address some of the challenges presented by this growing need and impact on the lived experience of this vulnerable population. This systematic review was undertaken to identify the research on the use of electronic assistive technology within long-term residential care settings. A total of 3229 papers published from the inception of each of the databases up until May 2016 were retrieved from searches in four major databases. Sixty-one were identified to be included in the review. The inclusion criteria were: original peer reviewed journals; an electronic assistive technology intervention; with residents or tenants living with dementia or their family or paid caregivers; in supported living environments or residential care. The data extracted from the included studies focused on the methodology, technology, outcomes and the role of people living with dementia within the research. Overall, an extensive variety of technical interventions were found, with a broad range of methodological heterogeneity to explore their effect. Additionally, wide-spanning outcomes to support the potential of technology solutions and the challenges presented by such intervention were found.
(Edited publisher abstract)
Subject terms:
assistive technology, systematic reviews, dementia, supported living, supported housing, residential care, telecare, long term care, intervention;