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How do people with dementia make sense of their medications? An interpretative phenomenological analysis study
- Authors:
- LIM Rosemary H. M., SHARMEEN Taniya, DONYAI Parastou
- Journal article citation:
- International Journal of Geriatric Psychiatry, 37(2), 2022,
- Publisher:
- Wiley
Background: Managing medication is complex and multifaceted for people with dementia and their family carers. Despite efforts to support medication management, medication errors and medication-related hospital admissions still occur. This study investigated how people with dementia viewed and talked about their different medications and their medication taking. Methods: An interpretative phenomenological analysis (IPA) qualitative research design combining photo elicitation and in-depth interviews was used. People with a diagnosis of mild or moderate dementia took photographs of anything they viewed to be related to medication, with or without the help of family carers, over any two-day period. The photographs were then used as cues for subsequent in-depth interviews, which were analysed using IPA. Results: Twelve people with dementia were interviewed. Four themes encapsulated the experiences: (1) Medication as a lifeline, (2) Managing medications dominates daily lives and plans, (3) Struggling with uncertainty about the effectiveness of dementia medication and (4) Sense of ‘being’ and being in control. People with dementia viewed medication as a lifeline, especially donepezil, giving it preference over other daily medication they were using. Managing medications dominated the daily lives and plans of people with dementia and changed the way they viewed themselves and their life. People with dementia continually struggled with the imperceptible benefits of donepezil on their dementia, but despite such uncertainties, continued to take donepezil. Conclusions: This study provided unique insights into how people with dementia made sense of their medication. Healthcare professionals can use these insights to shape their practice around medication prescribing and advice in dementia. The findings are also useful to researchers looking to develop interventions to support medication management within the home setting. (Edited publisher abstract)
Listen to the talk of us: people with dementia speak out
- Author:
- KOTAI-EWERS Trisha
- Publisher:
- Alzheimers Australia WA
- Publication year:
- 2007
- Pagination:
- 200p., bibliog.
- Place of publication:
- Shenton Park, WA
Alzheimer's Australia WA, together with local Perth author Trisha Kotai-Ewers, is pleased to present Listen to the Talk of Us: People with Dementia Speak Out. This new book is a collection of in-depth conversations between Trisha and people with dementia whom she had met over the years. The aim of the book is to demonstrate the importance and the value in listening to, not just hearing, the voices of people with dementia.
Investigating the ways that older people cope with dementia: a qualitative study
- Authors:
- PRESTON Laura, MARSHALL Ann, BUCKS Romola S.
- Journal article citation:
- Aging and Mental Health, 11(2), March 2007, pp.131-143.
- Publisher:
- Taylor and Francis
Understanding the way that older people cope with dementia has important implications for the enhancement of the psychological well-being and quality of life of this group of people. This qualitative study explored how older people cope with dementia, by engaging 12 people with early-stage dementia in semi-structured interviews. Interpretative phenomenological analysis (IPA) was used to identify the shared themes in participants' accounts. Three major themes emerged: 'managing identity in relation to dementia', 'making sense of dementia', and 'coping strategies and mechanisms' (the latter theme divided into 'everyday, individual strategies', 'coping in relation to others', and 'personal attitude/approach'). There were also two additional themes in relation to process issues: issues of 'conflict and control' which were evident across all other themes, as was individuality and the importance of 'context' in coping with dementia. These findings are discussed in the relation to previous research in this field, and suggestions for further research and clinical practice are outlined.
Research into practice
- Author:
- MANTHORPE Jill
- Journal article citation:
- Community Care, 14.3.02, 2002, p.47.
- Publisher:
- Reed Business Information
Looks at several pieces of dementia, each pointing to the need to listen to the views of dementia sufferers.
People with dementia reveal their views of homecare
- Author:
- HEISER Sue
- Journal article citation:
- Journal of Dementia Care, 10(1), January 2002, p.22.
- Publisher:
- Hawker
As part of a 'best value' review, a day centre in west London recently invited people with dementia to contribute their views of the home care services they use. Reports on how the team conducted the review, and what the service users said.
Patient and proxy measurement of quality of life among general hospital in-patients with dementia
- Authors:
- SHEEHAN Bart D., et al
- Journal article citation:
- Aging and Mental Health, 16(5), July 2012, pp.603-607.
- Publisher:
- Taylor and Francis
The study examined quality of life ratings among people with varying severity of dementia and their carers, recruited in a general hospital setting in England. Participants included 109 people with dementia, and their carers, from psychiatric referrals of inpatients in two general hospitals in England. For patients, data were gathered on quality of life using QoL-AD and EQ5-D, and depressive symptoms, and carer data was gathered on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. Findings revealed that patients rated their quality of life more highly than carers on Qol-AD and on EQ5D. For carers, only more severe dementia was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress. Lower patient QoL-AD scores were associated with patient depression, impaired activities of daily living and carer psychiatric symptoms. The authors concluded that patients and carers appeared to have very different concepts of quality of life in dementia. Implications for practice are discussed.
The lived experience of spirituality and dementia in older people living with mild to moderate dementia
- Authors:
- DALBY Padmaprabha, SPERLINGER David J., BODDINGTON Stephen
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 11(1), January 2012, pp.75-94.
- Publisher:
- Sage
This study aimed to understand how older people's experiences of spirituality, religion or faith were affected by having dementia, and how the spiritual aspects of their lives affect the experience of dementia. Participants included 6 older people from the southeast of England, with mild to moderate dementia, who were interviewed about their experience of spirituality and dementia. Five themes were identified: experience of faith; searching for meaning in dementia; ‘I'm not as I was’ – changes and losses in experience of the self; staying intact; and current pathways to spiritual connection and expression. The authors concluded that the findings offered a unique perspective on the experience of spirituality and dementia, uniting themes from both research and theory concerning the experience of the self and the experience of spirituality in dementia. Implications for dementia care services and pastoral care are discussed.
I'm still the same person: the impact of early-stage dementia on identity
- Authors:
- CADDELL Lisa S., CLARE Linda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(3), August 2011, pp.379-398.
- Publisher:
- Sage
Using a sample of 5 women and 5 men aged between 65 and 88 years who were participating in a wider study on identity in dementia, this qualitative research examined participants' perceptions of the impact of dementia on their identity. It focused on whether people with early-stage dementia felt they had changed as a person, what kind of person they thought they were, and how they thought their identity might be affected by dementia in the future. The article reports on findings from the interviews with participants, which were analysed using interpretive phenomenological analysis. Four main themes emerged from the data: I'm still the same person versus I'm different to what I used to be, I'll always stay the same versus I'm not sure what to expect, life is much the same versus it is affecting my life, and always that connection versus it's not just me (relationships with friends and family). The analysis suggested that for the most part participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. The authors discuss the findings and their implications.
Living on the threshold: the spatial experience of living alone with dementia
- Authors:
- DE WITT Laura, PLOEG Jenny, BLACK Margaret
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 8(2), May 2009, pp.263-291.
- Publisher:
- Sage
The purpose of this qualitative study was to understand the meaning of living alone for older people with dementia. Fourteen audio-taped open-ended interviews were conducted with eight such older women in Ontario, Canada. The data were analyzed using an adaptation of van Manen's method. Heidegger's philosophy informed interpretation of the findings through the theme living on the threshold. The study findings deepen understanding of `space' and `place' in the experience of living alone with dementia. Participants sought the middle-ground of dialectical tensions within the threshold space and shared insights about their spatial experience of: (a) being here, (b) being there, (c) being out, and (d) keeping out. These older women risked losing their threshold space when admitting to mistakes as their illness progressed. The authors conclude with examples of how this spatial interpretation may inform and improve communication with and care of older people in similar circumstances.
Consulting service users on their day care
- Authors:
- NEIL Sandra, IVANIS Sladjana
- Journal article citation:
- Journal of Dementia Care, 16(5), September 2008, pp.37-38.
- Publisher:
- Hawker
The authors describe how they sought the views of people with dementia attending a day centre in north west England. The day centre is provided for people who have a range of differing needs including those who have, or are at risk of developing, mental health problems and individuals with mild to moderate dementia. The authors highlight some implications for others seeking feedback from service users on the aspects and activities they value most.