AwareCare: Development and validation of an observational measure of awareness in people with severe dementia

Clare, Linda; Whitaker, Rhiannon; Quinn, Catherine; Jelley, Hannah; Hoare, Zoë; Woods, Bob; Downs, Murna; Wilson, Barbara A.

doi:10.1080/09602011.2011.640467

Cited by 27 publications

(45 citation statements)

References 29 publications

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“…One example that explores the uniqueness of human response at the later stages of dementia is the AwareCare study [50]. They proposed that if care staff can be trained to identify signs of awareness this should support greater responsiveness and facilitate the expression of awareness.…”

Section: Main Textmentioning

confidence: 99%

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

et al. 2017

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BackgroundDementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.Main bodyAn interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.ConclusionsThe care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

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Section: Main Textmentioning

confidence: 99%

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

et al. 2017

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“…One solution is to obtain both types of rating at earlier stages, making it possible to interpret informant ratings more effectively once these become the only ratings available [ 87 ]. Another is to identify objective indicators of poor well-being in severe dementia, for example, confinement to home and expression of a restricted range of positive emotions [ 16 , 89 ]. Using a combination of quantitative methods in this way, it is feasible to examine the experience of ‘living well’ across the trajectory of dementia.…”

Section: Introductionmentioning

confidence: 99%

Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study

Clare

Nelis

Quinn

et al. 2014

Health Qual Life Outcomes

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122

162

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BackgroundEnabling people with dementia and carers to ‘live well’ with the condition is a key United Kingdom policy objective. The aim of this project is to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia, and to understand what ‘living well’ means from the perspective of people with dementia and carers.Methods/DesignOver a two-year period, 1500 people with early-stage dementia throughout Great Britain will be recruited to the study, together with a carer wherever possible. All the participants will be visited at home initially and again 12 months and 24 months later. This will provide information about the way in which well-being, life satisfaction and quality of life are affected by social capitals, assets and resources, the challenges posed by dementia, and the ways in which people adjust to and cope with these challenges. A smaller group will be interviewed in more depth.DiscussionThe findings will lead to recommendations about what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia.

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“…This is more evident in moderate to severe stages of dementia 4,5 . The lack of meaningful activities has been associated with a decrease in residents' functional status, increased behavior problems, social isolation and poor quality of life 3,5 .…”

Section: Introductionmentioning

confidence: 92%

Making Sense(s) in Dementia

Cruz

Marques

Barbosa

et al. 2013

Am J Alzheimers Dis Other Demen

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Disclosure:The authors have reported no conflicts of interest. Contact information for reprint requests: Joana Cruz Department of Health Sciences (Secção Autónoma de Ciências da Saúde -SACS), University ofAveiro, Campus Universitário de Santiago, Edifício III, Portugal. E-mail: joana.cruz@ua.pt AbstractLack of engagement in meaningful activities is associated with poor quality of life in dementia thus, the development of these activities has been recommended. This pilot study aimed to develop a multisensory and motor-based group activity program for residents with dementia and assess its impact on residents' behavior.The program was designed using a multisensory and motor-based approach in 16 45-minute weekly sessions tailored to residents' characteristics. Four residents with advanced dementia participated in the program. The frequency and duration of residents' behavior were assessed using video-recordings. All residents participated in the proposed activities, although they were more participative and communicative in some sessions than in others.Group activity programs based on MSS and MS can be a promising approach for people with advanced dementia, however further research is needed. This study may serve as reference to the implementation of future programs aiming to increase person-centeredness of the care provided.

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AwareCare: Development and validation of an observational measure of awareness in people with severe dementia

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Cited by 27 publications

References 29 publications

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study

Making Sense(s) in Dementia

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