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;
Animal-assisted interventions (AAIs) are non-pharmacological, cost-effective interventions developed to improve outcomes in patients with dementia; however, the effects remain inconclusive. The purpose of this study was to analyze the efficacy of AAIs for people with dementia. A systematic review and meta-analysis was performed of English-language literature published from January 1, 2001...
(Edited publisher abstract)
Animal-assisted interventions (AAIs) are non-pharmacological, cost-effective interventions developed to improve outcomes in patients with dementia; however, the effects remain inconclusive. The purpose of this study was to analyze the efficacy of AAIs for people with dementia. A systematic review and meta-analysis was performed of English-language literature published from January 1, 2001, to July 3,2021, and indexed in the following databases: CINAHL, EMBASE, MEDLINE, PubMed, Web of Science, Cochrane, and PsycINFO. Intervention groups were people with dementia who received AAIs. Study quality was assessed using the Joanna Briggs Institute tool. Among 10 included studies, significant differences in depression levels were identified between the intervention and control groups (p < 0.001). No significant differences in cognitive function, neuropsychiatric syndrome, or independence in activities of daily living were observed between groups. Future research remains necessary to examine the effects of AAIs on depression during different stages of dementia. AAIs therapists may collaborate with healthcare workers to improve AAIs benefits.
(Edited publisher abstract)
HERNANDEZ Gabrielle B. Rosa, MURRAY Carolyn M., STANLEY Mandy
Journal article citation:
Health and Social Care in the Community, 30(2), 2022, pp.488-497.
Publisher:
Wiley
...staff were invited to participate. Consent from any older adults with known cognitive impairment was sought from next of kin. Consent for children was provided by caregivers. A total of 12 clients (n = 8 diagnosis of dementia, 4 without dementia; 11 females, 1 male), three staff members, and 10 caregivers and their children (0–5 years) provided consent to be observed. Of these, five older adults (all
(Edited publisher abstract)
Intergenerational programs are emerging within the aged-care context as they provide a unique opportunity for older adults living with or without cognitive impairments to connect with children. One type of intergenerational program is an ‘intergenerational playgroup’ which creates opportunities for children to develop their skills, parents to create a local peer support network and provides older adults at risk of isolation with vital community interaction. The objective of this research was to evaluate an intergenerational playgroup taking place weekly within a residential aged-care setting. A qualitative case study research design was used to perform five observation sessions and semi-structured in-depth interviews. All members of the group (older adults and caregivers) as well as involved staff were invited to participate. Consent from any older adults with known cognitive impairment was sought from next of kin. Consent for children was provided by caregivers. A total of 12 clients (n = 8 diagnosis of dementia, 4 without dementia; 11 females, 1 male), three staff members, and 10 caregivers and their children (0–5 years) provided consent to be observed. Of these, five older adults (all female, 1 with diagnosis of dementia), three staff and five caregivers participated in interviews. Data were analysed thematically. Four key themes: Learning from each other; Appreciating experience in the moment; Connecting through play; and A sense of home and belonging were identified. These themes suggest that older adults play an active role in the dynamics of the playgroup, often being ‘in the moment’ during play, but also actively reminiscing on their past experiences of childhood. The sense of an inclusive and supportive community with a culture of being open to learning and to different perspectives was strong. The findings support the role of intergenerational playgroups for promoting community engagement with benefits of building relationships and connectivity for all stakeholders.
(Edited publisher abstract)
Subject terms:
user views, older people, intergenerational relationships, case studies, residential care, children, play, evaluation, intervention, staff views;
NIELSEN T. Rune, NIELSEN Dorthe S., WALDEMAR Gunhild
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.477-488.
Publisher:
Sage
Background: There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer’s health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers...
(Edited publisher abstract)
Background: There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer’s health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers’ sense of competence in managing dementia and their mental well-being. Methods: A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. Results: Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers’ sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. Conclusions: The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.
(Edited publisher abstract)
Subject terms:
informal care, black and minority ethnic people, dementia, intervention, carers, Alzheimers disease, psychosocial intervention, person-centred care;
Health and Social Care in the Community, early cite February 2022,
Publisher:
Wiley
Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed...
(Edited publisher abstract)
Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed, 6-session dementia training intervention for homecare workers (NIDUS-professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video-calls during Oct 2020–March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3- and 6-months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. This thematic analysis reports one over-arching theme: ‘Having time and space to reflect is a rare opportunity’. Within this, this study identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which this study explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants’ lack of clarity about their purpose. The findings were used to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway.
(Edited publisher abstract)
Subject terms:
training, dementia, intervention, home care, care workers, Covid-19, evaluation, skills;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.489-502.
Publisher:
Sage
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people...
(Edited publisher abstract)
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people living with dementia to develop an intervention based on nostalgia, and to assess whether couples could engage in nostalgic conversations. Method: The research fell into three phases. First, people living with dementia and with carers were consulted to identify the parameters for a nostalgic intervention. Second, a workbook was drafted that contained triggers for nostalgic conversations, which the researchers then took back to the public contributors for refinement. Finally, the workbook was trialled over 5 weeks with six couples, each of which included a person living with dementia. The researchers assessed pre- and post-intervention self-esteem, self-growth, meaning in life and social connectedness for participants with dementia and social connectedness for carers. This study then calculated Reliable Change Index scores and established levels of clinically significant change. This study also interviewed couples at the end of the intervention to explore its implementation and acceptability. Results: All six couples could identify nostalgic memories, with five couples successfully integrating the nostalgic conversations into their day-to-day lives. A sixth couple found it difficult to engage fully with the intervention, but still considered it useful. All six couples manifested a reliable change in at least one outcome, with one couple showing reliable change across three outcomes. Conclusion: The psychological benefits of nostalgia have been robustly demonstrated in laboratory-based studies. This co-production of an intervention that sets nostalgic recall into the context of a conversation has clinical potential but requires further investigation through a larger study.
(Edited publisher abstract)
Subject terms:
dementia, reminiscence therapy, co-production, intervention, self-esteem, social networks, life story work, partners, user participation;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.426-441.
Publisher:
Sage
Background and objectives: this study 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...
(Edited publisher abstract)
Background and objectives: this study 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, public and patient (PPI) and professional members of the NIDUS co-design groups were invited to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members were invited to participate in qualitative telephone interviews. The researchers thematically analysed and integrated mixed-methods findings. Results: Most (15/20; 75%) of the PPI members approached participated. Four themes were identified: (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: This paper reflects 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. The researchers encourage future studies to incorporate evaluations of co-design processes into study design.
(Edited publisher abstract)
Subject terms:
co-production, user participation, dementia, complex needs, intervention, service development, service users, user views;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.618-647.
Publisher:
Sage
There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect...
(Edited publisher abstract)
There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect on a resident’s quality of life and behavioural and psychological symptoms of dementia? After searching and screening on the three major databases PsycINFO, MEDLINE and CINAHL Plus for papers published between January 2005 and May 2021, 22 papers were included for synthesis and appraisal due to their relevance to family involvement interventions and or family involvement with resident outcomes. Results show that in 11 interventions designed to enhance at least one type of family involvement, most found positive changes in communication and family–staff relationships. Improvement in resident behavioural and psychological symptoms of dementia was reported in two randomised controlled trials promoting partnership. Visit frequency was associated with a reduction of behavioural and psychological symptoms of dementia for residents with moderate dementia. Family involvement was related to positive quality of life benefits for residents. Contrasting results and methodological weaknesses in some studies made definitive conclusions difficult. Few interventions to specifically promote family involvement within care homes following placement of a relative with dementia have been evaluated. Many proposals for further research made over a decade ago by Gaugler (2005) have yet to be extensively pursued. Uncertainty remains about how best to facilitate an optimum level and type of family involvement to ensure significant quality of life and behavioural and psychological symptoms of dementia benefits for residents with dementia.
(Edited publisher abstract)
Subject terms:
dementia, systematic reviews, intervention, care homes, user participation, participation, outcomes, quality of life, nursing homes, family relations;
For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural...
(Edited publisher abstract)
For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural and physiological symptoms related to dementia, proposing personalised interventions aimed at supporting patients and their relatives from diagnosis until death. With particular reference to long-term settings, this work is aimed at understanding the organisational implications of three types of interventions (labelled supportive care interventions - SCIs) that have characterised this shift in dementia care: person-centred, palliative and multi-disciplinary care. Conducted by following the integrative review method, this review underlines how SCIs have controversial consequences on the quality of care, the care-givers’ quality of life and cultural backgrounds. After an in-depth analysis of selected papers, this paper offers some considerations about the implications of SCIs for long-term care organisations and future research directions.
(Edited publisher abstract)
Subject terms:
dementia, older people, person-centred care, long term care, multidisciplinary services, intervention;
Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary...
(Edited publisher abstract)
Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only. Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models. Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p < .05). Passive relaxation in this group was negatively associated with negative affect (r = –0.50, p = .01) and positively associated with activity-related stress (r = 0.52, p = .007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly. Conclusion: Carer’s daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one’s daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer’s life and provide sustainable support.
(Edited publisher abstract)