Dementia

Narratives of health and illness: Arts-based research capturing the lived experience of dementia.

Moss, H. and O’Neill, D.
Dementia
2017
This paper by Moss and O’Neill (2017) has two main purposes. It presents the residencies of three artists in a geriatric medicine unit in a hospital in Dublin, ROI.
These residencies were initiated to create new artistic work that would promote greater understanding of the lived experience of persons with dementia and their experience of using services. Arts-based research methodologies were adopted and this approach is presented and the benefits explored. In each of the three residencies, the artists engaged with eight people with dementia, their family carers and hospital staff and the format that the residencies took is described. The paper summarises the results of the residencies under three headings: creation of original art works of high artistic quality; opportunities for increasing understanding and public awareness of dementia; creation of artworks that have an ongoing role as a tool for students to learn about dementia. The authors discuss the challenges and issues that arise when artists are brought into a medical setting, and also the contribution that arts-based research can make.

The experience of spirituality from the perspective of people living with dementia: A systematic review and meta-synthesis.

Daly, L., Fahey-McCarthy, E. and Timmins, F.
Dementia
2016
In this systematic review and meta synthesis Daly et al. (2016) found that while it may not be explicitly named as such, spirituality was a significant part of the lives of people with dementia, with some studies suggesting that a sense of spirituality may in fact be heightened in dementia.
For some spirituality is associated with religion and a connection with God while for others it is connected with nature, art and music. Spirituality in dementia was also found to be embodied through relationship with others, fostering an ongoing sense of connection and occupation. However the person experiences their spirituality the literature indicates it is something that sustains the person in the face of dementia. The authors discuss the importance of both acknowledging and meeting spiritual needs for people with dementia while urging that no assumptions are made. Rather they argue these needs must be addressed at a personal level and as such they draw our attention to the importance of life story work. They also argue that the findings confirm the need for spiritual competency among health and social care practitioners.

Therapeutic use of dolls for people living with dementia: A critical review of the literature.

Mitchell, G., McCormack, B. and McCance
Dementia
2016
Mitchell et al. (2016) document a critical review of the literature on doll therapy for people with dementia. A total of 11 studies are included; most are observational of people with dementia engaged in doll therapy.
Four examine perceptions of healthcare professions and one is a retrospective analysis of case notes pre and post doll therapy. The literature suggests that some people with dementia may benefit from the use of dolls with improvements shown in communication, interaction with others, dietary intake and general wellbeing. However it remains controversial with healthcare professionals’ attitudes identified as a barrier.

Person-centred dementia care: a reality check in two nursing homes in Ireland

Colomer, J. and de Vries, J.
Dementia
2016
Person centred approaches to care (PCC) in Ireland are widely accepted at policy and management level. This study aimed to examine the reality of its practice.
Colomer & De Vries (2016) took a phenomenological approach to identify the perceptions and experiences of care workers in two nursing homes with a PCC policy. They found that most participants had not received training or education in PCC. They were vague and confused on questions examining their knowledge of PCC. Participants placed high value on training in practice, identifying team work as essential and highlighting the pressures of time and staffing constraints. The study found evidence of implicit knowledge of PCC but participants continued to describe aspects of good care within a task orientated framework. The authors acknowledge that the study is limited by size and recruitment from only 2 homes. However care assistant training in Ireland is standardised so they suggest it reflects issues across Ireland and a need to assess and most likely improve training.

Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature.

Beck, E.R., McIlfatrick, S., Hasson, F. and Leavey, G
Dementia
2015
Beck et al. (2015) provide a narrative summary of evidence on the perspectives of healthcare professionals (HCPs) on advance care planning (ACP) for people with dementia living in long term care.
The authors found a lack of knowledge, both of dementia and of advance care planning for people with dementia. Many HCPs do not recognise dementia as a condition requiring palliative care and they found a lack of responsibility for initiating this care with many professionals seeing it as the responsibility of others. Many of the barriers highlighted in the review were ethical and moral in nature and included the issue of capacity. The authors suggest the evidence points to a need for improved knowledge in dementia set in the context of training that addresses preconceptions of palliative care and has an emphasis on integration. They argue that further research is urgently needed to inform the development of interventions that support the implementation of ACP by health care professionals.

General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia.

Carter, G., van der Steen, J.T., Galway, K. and Brazil, K
Dementia
2017
Using a quantitative survey Carter et al. (2017) explored the perceptions of GPs across Northern Ireland on barriers and solutions to the provision of good quality palliative care for people with dementia.
They identified 5 overarching themes: lack of knowledge and understanding; limited availability of resources; mismanagement of appropriate care; poor interdisciplinary team approach and family support and involvement. Solutions identified included enhanced training and education, increased funding and greater family involvement. The authors acknowledged the limitation of the study being carried out in Northern Ireland but point out that the findings are in line with existing research.

Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies.

Murphy, K., Jordan, F., Hunter, A., Cooney, A. and Casey, D.
Dementia
2015
Murphy et al. (2015) aimed to identify key strategies to include people with dementia in qualitative research in a meaningful way. A number of studies were examined to identify strategies previously used or proposed by researchers and a guideline developed.
The four main areas within the guide are gaining COnsent, maximising Responses, Telling the story and Ending on a high. Having developed the CORTE guideline, the authors then searched relevant literature to examine the extent to which the literature articulated these strategies. Of the 30 studies reviewed, few articulated the CORTE strategies and the second part of this paper focuses on their operationalisation within a large national study DARES. The authors describe the process involved in using each of the 4 strategies within this study and some of the points they highlight are the complex and intensive nature of gaining consent, the time required to build relationships that support the development of trust and rapport, and the essential nature of flexibility. They conclude that researchers must be trained and know how to choose and use the right tools and strategies to maximise meaningful involvement of persons with dementia.

The Nun Study and Alzheimer’s disease: Quality of vocation as a potential protective factor?

Keohane, K. and Balfe, M.
Dementia
2017
This paper uses data from the Nun Study; an ongoing longitudinal epidemiological study that began in 1986, in America. Over 900 nuns have agreed to undertake regular psychometric testing and to donate their brains post-mortem for autopsy.
Keohane and Balfe (2017) consider the data in terms of Max Weber’s concept of ‘beruf’ or calling. While acknowledging that other factors may also be at play, the authors posit that vocation may offer some protection against dementia. Some of the nuns who died had significant biological symptoms post mortem but had appeared to be functioning quite highly before death. Research has already established that education and occupation may offer some protection and the authors suggest that an intense vocation coupled with complex intellectual activities and the social support found in such a cohesive community may facilitate development of active brain reserve against dementia. They discuss the loss of vocation in modern society and the possibility that we are moving towards “a new wave of dementiagenic currents.”

Concepts for communication about risk in dementia care: A review of the literature.

Stevenson, M., McDowell, M.E. and Taylor, B.J., 2016. Concepts for communication about risk in dementia care: A review of the literature. Dementia, p.1471301216647542
Dementia
2016
Pointing to the inherent nature of risk in health and social care for people with dementia, Stevenson et al. (2016) report on a synthesised review of research on risk concepts and communication in dementia.
Most literature focused on physical safety risks although a smaller number of articles did refer to psychosocial risks. Risk was found to be constructed differently among people with dementia, caregivers and professionals, with different conceptual understandings and approaches to risk. This variety, they argue, adds weight to the need for clear, transparent communication of risk, suggesting that a qualified knowledge base of risk outcomes in dementia care would support the development of better policy and practice.

What do people with dementia and their carers want to know about neuroimaging for dementia?

Featherstone, H., Butler, M.L., Ciblis, A., Bokde, A.L., Mullins, P.G. and McNulty, J.P.
Dementia
2015
Featherstone et al. (2015) used focus groups and structured interviews to investigate people with dementia and carers' knowledge of dementia diagnosis pathways, the role of neuroimaging in diagnosis and what might be included on a website providing neuroimaging information.
Results indicated very limited understanding of neuroimaging and its role in diagnosis. Participants felt that better explanations could reduce anxiety and also add validity to a diagnosis, with the potential for avoiding diagnosis denial. While both carers and people with dementia were keen to have more information on neuroimaging they pointed out that the information needs to be focused on the person with dementia and carer’s specific needs. People with dementia were found to be unlikely to use an internet resource, but carers were particularly interested in such a resource. Again, they wanted this to be specific to the stage and sub type of dementia they had experience of. Findings indicate a level of dissatisfaction with current resources on dementia and a need for any information to be perceived as trustworthy and accurate. The authors conclude there is a need for better neuroimaging information and that this research can inform the development of an online resource and the investigation of other methods for providing information.

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