How can we get access to the experiences of people with dementia?

Nygård, Louise

doi:10.1080/11038120600723190

Cited by 165 publications

(181 citation statements)

References 43 publications

(60 reference statements)

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“…69 In the second part the interviewer went through the Participant Information Sheets with the person with dementia and their carer and explained topic areas of the questions.…”

Section: Qualitative Studymentioning

confidence: 99%

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

Orgeta

Leung

Yates

et al. 2015

Health Technol Assess

153

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BackgroundGroup cognitive stimulation therapy programmes can benefit cognition and quality of life for people with dementia. Evidence for home-based, carer-led cognitive stimulation interventions is limited.ObjectivesTo evaluate the clinical effectiveness and cost-effectiveness of carer-delivered individual cognitive stimulation therapy (iCST) for people with dementia and their family carers, compared with treatment as usual (TAU).DesignA multicentre, single-blind, randomised controlled trial assessing clinical effectiveness and cost-effectiveness. Assessments were at baseline, 13 weeks and 26 weeks (primary end point).SettingParticipants were recruited through Memory Clinics and Community Mental Health Teams for older people.ParticipantsA total of 356 caregiving dyads were recruited and 273 completed the trial.InterventioniCST consisted of structured cognitive stimulation sessions for people with dementia, completed up to three times weekly over 25 weeks. Family carers were supported to deliver the sessions at home.Main outcome measuresPrimary outcomes for the person with dementia were cognition and quality of life. Secondary outcomes included behavioural and psychological symptoms, activities of daily living, depressive symptoms and relationship quality. The primary outcome for the family carers was mental/physical health (Short Form questionnaire-12 items). Health-related quality of life (European Quality of Life-5 Dimensions), mood symptoms, resilience and relationship quality comprised the secondary outcomes. Costs were estimated from health and social care and societal perspectives.ResultsThere were no differences in any of the primary outcomes for people with dementia between intervention and TAU [cognition: mean difference –0.55, 95% confidence interval (CI) –2.00 to 0.90;p-value = 0.45; self-reported quality of life: mean difference –0.02, 95% CI –1.22 to 0.82;p-value = 0.97 at the 6-month follow-up]. iCST did not improve mental/physical health for carers. People with dementia in the iCST group experienced better relationship quality with their carer, but there was no evidence that iCST improved their activities of daily living, depression or behavioural and psychological symptoms. iCST seemed to improve health-related quality of life for carers but did not benefit carers’ resilience or their relationship quality with their relative. Carers conducting more sessions had fewer depressive symptoms. Qualitative data suggested that people with dementia and their carers experienced better communication owing to iCST. Adjusted mean costs were not significantly different between the groups. From the societal perspective, both health gains and cost savings were observed.ConclusionsiCST did not improve cognition or quality of life for people with dementia, or carers’ physical and mental health. Costs of the intervention were offset by some reductions in social care and other services. Although there was some evidence of improvement in terms of the caregiving relationship and carers’ health-related quality of life, iCST does not appear to deliver clinical benefits for cognition and quality of life for people with dementia. Most people received fewer than the recommended number of iCST sessions. Further research is needed to ascertain the clinical effectiveness of carer-led cognitive stimulation interventions for people with dementia.Trial registrationCurrent Controlled Trials ISRCTN65945963.FundingThis project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme and will be published in full inHealth Technology Assessment; Vol. 19, No. 64. See the NIHR Journals Library website for further information.

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“…69 In the second part the interviewer went through the Participant Information Sheets with the person with dementia and their carer and explained topic areas of the questions.…”

Section: Qualitative Studymentioning

confidence: 99%

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

Orgeta

Leung

Yates

et al. 2015

Health Technol Assess

153

View full text Add to dashboard Cite

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“…A combination of interviews and observations, conducted in the participants homes, was considered to bridge possible threats to the quality of the data (e.g., due to memory impairments) (39). The qualitative research interviews (40) were based on an interview guide that comprised questions with an open-ended format and focussed on the participants' experiences of difficulties using ET after the ABI, how they responded to these difficulties and the influence on their engagement in tasks in daily life.…”

Section: Data Collectionmentioning

confidence: 99%

Response actions to difficulties in using everyday technology after acquired brain injury

Lund

Engström

Lexell

2011

Scandinavian Journal of Occupational Therapy

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Purpose: People with acquired brain injury (ABI) have difficulties using everyday technology (ET) in daily tasks at home and in the society. To support them managing the demands imposed by using ET, knowledge is needed about their response actions to the difficulties that occur during task performance, their conditions and efficiency. The aim of this study was to explore and describe what characterizes response actions to difficulties using ET, their conditions and how they influence the experiences of tasks in daily life among people with ABI.Methods: Interviews and observations were undertaken with thirteen men and women with an ABI. Data were analyzed qualitatively using the constant comparative method. Results:The participants' response actions were categorized as (i) deliberately and organized planning, (ii) random and inflexible repeating (iii), re-evaluating tasks, (iv) explaining difficulties related to others, and (iv) proving and protecting capability. Certain conditions were decisive for the different response actions to be applied and also for their effectiveness in enabling engagement in tasks in daily life. Each participant used several type of response actions and the same action could be applied in several situations. Conclusion:To support people with an ABI to manage the demands imposed by using ET, it is important to identify the uniqueness of each client and his or her response actions to difficulties using ET and thereafter adjust the interventions accordingly.

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“…However, their ability to express and discuss experiences, perceptions, feelings, and thoughts, and to provide us with a comprehensive account of these, may be supported in several ways: by the context, by simultaneously showing by doing, and by adapting the interview (Nyga˚rd, 2006). In his plea for more research into the subjective experience of dementia, Cohen (1995) has emphasized that attempting to hear a person's 'voice' rather than obtaining his or her narrative is a more suitable approach.…”

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confidence: 99%

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

et al. 2010

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This article reviews the literature on the inclusion of the perspective of people with dementia when evaluating quality of care. The few identified relevant studies suggest that there is consensus that people with mild to moderate dementia are able to talk about their experiences with care with clarity and insight. A minimum level of orientation to place, attention and language skills in the person with dementia are important for a successful subjective evaluation. On the basis of the relevant literature, we additionally formulated practical guidelines useful when one aims to collect information with interviewing, self-administered questionnaires, or focus groups from people with dementia to assess quality of care. In people with mild to moderate dementia, assessment of quality of care can best be done by individual interviewing and focus groups. Further research is needed to ascertain what people with dementia find important in relation to quality of care.

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How can we get access to the experiences of people with dementia?

Cited by 165 publications

References 43 publications

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

Response actions to difficulties in using everyday technology after acquired brain injury

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

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