Understanding and managing everyday task performance in dementia
Research type
Research Study
Full title
Interaction of intrinsic and extrinsic factors underpinning functional disability in dementia
IRAS ID
199002
Contact name
Eneida Mioshi
Contact email
Sponsor organisation
University of East Anglia
Clinicaltrials.gov Identifier
199002, IRAS Project ID
Duration of Study in the UK
3 years, 11 months, 30 days
Research summary
Research Summary
In the UK, it is estimated that 850,000 people suffer from dementia, two-thirds of whom are living in the community as opposed to residential care homes. As well as causing decline in cognitive functions such as memory, planning and decision-making, dementia can lead to functional disability (the inability to carry out activities of daily living (ADLs) independently). The cost of functional disability to patients, their families and society as a whole is significant; however, key factors underpinning it are yet to be systematically investigated. Functional abilities can be affected by both intrinsic factors (relating to the patient or the disease process) which are difficult to change, and extrinsic factors (such as the home environment and the physical surroundings) which it may be possible to adapt. The study poses four key questions, which will be addressed through completion of four work packages as follows:
Work package 1: What is the evidence that extrinsic factors related to the carer and the environment affect functional disability, and how does this vary with dementia severity?
Work package 2: What is the relative importance of carer burden and carer interaction to functional disability in each dementia stage?
Work package 3: Which factors predict functional decline over a 12-month period?
Work package 4: Can findings from the study be used to create a novel toolkit for activity engagement?Summary of Results
This study was carried out by a research team based at the University of East Anglia (UEA), Norwich. We created a simpler title ‘Understanding and Managing Everyday Task Performance in Dementia’ and an acronym to facilitate communication and identification of the study, TASKed. We will refer to the study with this acronym from here onwards.TASKed was primarily funded by the Alzheimer’s Society (Alzheimer's Society - United Against Dementia (alzheimers.org.uk)) and sponsored by UEA (UEA: University of East Anglia | Norwich, UK - UEA). Throughout the study, we also received financial support from the NIHR Applied Research Collaboration East of England (Home | ARC east of England (nihr.ac.uk)) and the NIHR Clinical Research Network (CRN Eastern (nihr.ac.uk)). A PhD studentship was also linked to this study through a scholarship funded by the Faculty of Medicine and Health Sciences at EA.
The research team based at UEA had a very strong partnership with the research delivery team at Norfolk and Suffolk NHS Foundation Trust (NSFT: Home | Norfolk and Suffolk NHS (nsft.nhs.uk)), which was key to the success of the study. We also had great support from Cambridgeshire and Peterborough Foundation Trust (CPFT: Home | CPFT NHS Trust), who joined the study as another research site in October 2018. Recruitment was also promoted through Join Dementia Research (CRN Eastern (nihr.ac.uk) and GP practices across Norfolk. As the study involved home visits to participants for data collection, and in most cases more than one visit to collect the information on the research protocol, we had to focus on residents living around Norfolk, Suffolk, Cambridgeshire, and Peterborough. Our team travelled also to Essex and Lincolnshire. Therefore, the great majority of our research participants involved in TASKed were residents from the East of England region.
Public involvement started at the writing up phase of the study proposal, well before submission for funding. This was done through a face-to-face meeting with several carers of people with dementia, where the study plan was discussed at length. Carers were fully supportive of the aims of the study. One key point raised by the carers was their concern about the follow up visit (proposed to be after 12 months), where they worried that many families may not be able to take part again. We discussed the pros and cons of having this second visit and agreed that despite the risk of losing many participants at follow-up (known as attrition), it was important to understand the changes in function after 12 months in those still able to take part. We also agreed that most dementia studies did not focus on the severe stages of dementia, which was another important aspect of TASKed. After funding was confirmed, carers continued to be involved, as the Alzheimer’s Society offered support through their Carer Network to our project: three carers were allocated as monitors to our study, and we have met once-twice/year with them since 2016 – and plan to continue for the final part of the study, where we are designing OTTO (more information below).
The main purpose of TASKed was to investigate key factors affecting loss of independence in dementia, which inevitably leads to great dependence from others and services and drives decisions on nursing care placements. By understanding the key factors behind loss of independence, we may be able to develop ways (for example new interventions) to delay decline in dependence and better support people affected by dementia to stay at home for as long as possible.
A novel focus of our study was to involve families affected by dementia. By this we meant not only the person who has the diagnosis of dementia, but also their primary informal carer, who is usually a spouse, child, or very close friend. We have recruited a pair of participants per household, totalling 360 participants, which was our study target. Of those, 28.3% took part again 12 months later. As anticipated by the carers, a smaller number of people would be able to take part in the study as dementia progressed. Reasons related to the loss of follow up seem to include nursing home placement; death; delays in the second visit due to COVID, which in turn also contributed to reasons already listed.
Being involved in the study meant taking part in the initial (baseline; total of 180 families, or 360 participants) and follow-up visit where possible. All families were visited at their home, except for the last follow up visits that were affected by the pandemic and had to be completed by phone. More detail on the impact of the pandemic below. Participants completed several dementia related assessments, including tests of memory (for the person of dementia) and assessments of well-being (for the primary carer). Some families were also invited for another sub-study (n=136), where they were invited to do a task in real time with one of the researchers (Camino) at the University of East Anglia, as well as at home. This sub-study was linked to Camino’s PhD project, which branched out from TASKed and was funded by the University of East Anglia and the NIHR Applied Research Collaboration East of England.
The pandemic negatively affected our study, like most research studies across the world. In our case, some families were about to complete their follow up visit, and that had to be initially paused. We then followed guidance on seeking ways to adapt our data collection, offering families to complete some questionnaires by post and some assessments by phone. Because of this adaptation, some assessments could not be completed, for example, memory tests that require a face-to-face visit. As mentioned above, only a proportion of participants were able to complete the follow up visit. Besides the anticipated impact of dementia progression on families’ ability to take part, we would speculate that the pandemic may have also negatively affected families’ availability to take part in research.
TASKed main questions:
1. To determine factors affecting performance of every-day activities at different stages of dementia, two different research questions were proposed:
I. Do extrinsic factors (e.g. physical home environment and carer support) affect functional disability, and how does this vary with dementia severity?
II. What is the relative importance of carer burden and carer interaction to functional disability in each dementia stage?
2. To identify modifiable factors to inform the development of novel approaches to minimise functional impairment and improve patient care and carer well-being
I. What are the factors predicting functional decline over a 12-month period?
II. Translation of WP1, 2 & 3 findings to develop a toolkit for health professionals to aid activity engagementTASKed results
The participants with dementia had an average age of 78 years old, were mostly male (65%), married (83.9%) and lived with their family (91.1%). They were mostly diagnosed with Alzheimer’s disease (63.9%) and were in the severe stages of dementia (50.6%).
Their carers were on average 73 years old, mostly female (71.7%) and spouses of the PwD (82.8%).Study question 1: Do extrinsic factors (e.g. physical home environment and carer support) affect functional disability, and how does this vary with dementia severity?
Two separate studies were conducted to investigate two different external factors: the environment and the strategies that carers use when dealing with dementia-related problems.External Factor: the role of the physical environment in PwD’s ability to perform activities.
Out of 180 dyads, 65 people with dementia and 65 carers were invited to complete this study. In this project, we manipulated a setting to remove its clutter and examined the impact of this change on ADL performance. The results indicated that our participants performed better at their own home rather than in the Research-lab, despite the absence of clutter in the Research-lab. This suggests that only decluttering an environment may not have a positive impact on PwD’s ADL performance. When grouped by dementia stage, mixed results were found. The home environment appeared to have offered benefits on ADL performance for those people in the moderate stages of dementia. In contrast, PwD in the mild and severe stages presented with the same level of ability regardless of the environment. In relation to the factors that may have contributed to PwD’s better ADL performance at home, we found that cognition was the only factor that predicted better performance in this project’s sample. This suggests that PwD relies greatly on cognitive abilities to complete daily tasks.External factor: the role of carer strategies in PwD’s ADL performance.
In order to investigate the role of the strategies that carers use daily to deal with dementia-related problems on ADL performance, another study was conducted. This was one of the first studies investigating how the combination of intrinsic and extrinsic dementia factors can affect PwD’s performance of ADLs. In this study, 143 families were included. The results showed how carer’s use of criticism style decreased ADL performance while use of carer encouragement style improved task performance, confirming the key role that carers have when supporting PwD in the performance of daily tasks. In addition, better global cognition increased ADL performance while apathy (inability to self-motivate) had the opposite effect.What is the relative importance of carer burden and carer interaction to functional disability in each dementia stage?
In order to investigate how these different carer-related factors can affect the PwD’s performance of ADLs, another data analysis was conducted. Here, we combined the sample as one only, given the small numbers of people in the mild stage of dementia. Carer’s reported symptoms of depression, carer’s reported anxiety and carer burden were included in the model. The results showed that the carer’s level of burden seemed to negatively affect the PwD’s ADL performance.What are the factors predicting functional decline over a 12-month period?
A longitudinal analysis showed that the PwD’s showed more difficulties when performing daily tasks after a year, as expected. In relation to the factors predicting this decline, we were unable to identify clear factors. Based on the previous studies, we had expected to identify global cognition, apathy or carer use of criticism, encouragement or active management style as predictors. This data analysis is ongoing and we aim to publish its results later this year. Of note, this longitudinal analysis has some limitations, in particular due to the loss of families at follow up. As mentioned previously, the loss of follow up was mostly due to the pandemic, participants’ nursing home placement, or death (n=51 out of 180).Medical problems/adverse reactions
Some adverse events were reported, but none of them attributable to the study, e.g. hospitalisations due to falls (outside of the visits) or pneumonia.How this study has helped patients and researchers Outputs from this study have the potential to benefit patients and families affected by dementia through use of the research results to inform current and future dementia services, as well as offering insights to researchers in their current work and future research work.
For example, the new intervention in development, OTTO (see below), will be tested to support safe activity engagement in people with dementia, while supporting carers, in future studies. Results from TASKed can also inform researchers of key factors (e.g. carer management styles) that need to be included in their studies.Research plans
All these findings will lay the foundations for the development of a new intervention for occupational therapists to promote activity engagement of PwD. This new intervention will be called OTTO, and will be delivered in a hybrid mode: bespoke online modules via a new platform, with occupational therapy home visits combined. OTTO will be tested for use by professionals working in the NHS and Social Care settings.Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: The study is not on a registry.
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Yes
If yes, describe or provide URLs to disseminated materials: List of scientific publications to dateCamino, J., Kishita, N., Bregolla, A., Rubinsztein, J., Khondoker, M., Mioshi, E. (2021). How does carer management style affect the performance of daily activities in people with dementia? Int J Geriatr Psychiatry, Dec;36(12):1891-1898. https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbc7AuFoovXmgzveh-2BUeXUssCbRN7KdEiNqUKrqugWfHuxt62_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJEapOQh-2Bzq8GH9geojwdHDGljwvQvCu3J5t6fFQOnDrkQFRPpfd7Qh1xLcgp3byPxXg68e9NU9gV93ZRy03rwVrOFkLrnDYPSCGm78kcprdVzewOTbynlx94PuO9HDQc8LXFN-2B1VDtRa2-2FEWJjvgsc7nSZQTvoN59vq32ZLkjRPQ-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7Ccf3924226a864036169608d9e5679652%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637793055339975578%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=NMdqskMtIL8ca7Zng2o6bj6TWScWsrBwDQmF%2Bp0wMsQ%3D&reserved=0 Epub 2021 Aug 19. PMID: 34378808.
Camino, J., Kishita, N., Trucco, A.P., Khondoker, M., Mioshi, E. (2021). A new and tidier setting: how does environmental clutter affect people with dementia’s ability to perform activities of daily living? Alzheimer Dis Assoc Disord, Aug, https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbf39oIw8XNJaKgjBgIK1P8pti3FYjESQI7J2qadFrrCGyxjL-2B0vQLaYY2YOhqb-2FuVw-3D-3DnAJm_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJEapOQh-2Bzq8GH9geojwdHDyM9Q6tJRhuFkzj3GahNCyJp7kSKgd-2FFbGizWbVWZGvyfvlCyWZ3FxLCbIaa-2B6pMBe3RbyRcwPBt9S4RediLNUfagmcsYfrF542Ht3JJMdKD18oino-2FpQn8Dljtyxf6rHZr7xEaIIWyK-2FQotBRFByBw-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7Ccf3924226a864036169608d9e5679652%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637793055339975578%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=SPsD%2BDsWPZBV%2FKjZIjhXNmnooLlJUo3qoFnVlq0WQ1c%3D&reserved=0 Epub ahead of print.
Camino, J., Khondoker, M., Trucco, A.P., Backhouse, T., Kishita, N., Mioshi, E. (2021). Contributions of carer management styles to the discrepancy between reported and observed ADL performance in people with dementia (under review).
Puthusserypaddy, V., Camino, J., Trucco, A.P., Bregola, A., Khondoker, M., Mioshi, E. (2021). Longitudinal changes in ADL performance in people with dementia. Intrinsic and extrinsic associated factors. (in preparation).
Conference Presentations
Camino J, Khondoker M, Naoko K, Mioshi E. Reported and observed task performance in dementia and the role of the carer management style. Poster presentation. International Psychogeriatric Association, virtual conference, 2021.
Bregola A, Trucco AP, Camino J, Mioshi E. Association between the use of assistive technologies in Alzheimer’s disease and Activities of Daily living: the role of cognition. Poster presentation. Alzheimer’s Association International Conference, virtual conference, 2020.Bregola A, Trucco AP, Camino J, Mioshi E. Apathy and use of assistive technology as predictors of functional performance in Alzheimer’s Disease. Poster presentation. Alzheimer’s Europe Conference, virtual conference, 2020.
Bregola A, Trucco AP, Camino J, Mioshi E. Does carer management style predict functional performance in medication management in Alzheimer’s Disease? Poster presentation. Alzheimer’s Europe Conference, virtual conference, 2020.
Camino J, Backhouse T, Kishita N, Mioshi E. Interaction style and assistance given by carers of people with dementia during the performance of daily tasks. A novel observation scale. Poster presentation. Alzheimer’s Europe Conference, virtual conference, 2020.
Camino J, Bregola A, Kishita N, Mioshi E. Carer’s appraisal of people with dementia’s performance of daily tasked. What is the role of the carer management style? Oral presentation. Alzheimer’s Association International Conference, Los Angeles, USA, 2019.
Camino J, Khondoker M, Kishita N, Mioshi E. Discrepancy between performance and ability to perform tasks in people with dementia: Does family carer management style influence this discrepancy? Poster presentation. Alzheimer’s Europe Conference, The Hague, Netherlands, 2019.
Camino J, Bregola A, Radakovic R, Rabet P, Kishita N, Mioshi E. Comparing task performance in people with dementia in different environments: Does environmental clutter play a role? Poster presentation. Alzheimer’s Society Annual Conference, London, UK, 2019.
Camino J. Understanding ability to perform activities of daily living in people with dementia: why is there a gap between ability and performance? Oral presentation. ‘Conference: Dementia care: the role of different professionals’, Osaka University, Japan, 2018.Master’s Dissertation
Title: Home Environmental Assessment Protocol (HEAP) and functional abilities in dementia.
Student: Pauline Rabet, School of Health Sciences, UEA.Other dissemination activities
Different public activities were carried out to present some of the results of these studies to members of the public. Invitations to participate to the presentations were sent to participants via email. In addition, an annual Christmas newsletter has been sent in the post for several years.
• Title: What carer management style should I use to support people with dementia in daily tasks?
Presenter: Julieta Camino
Dementia Open Forum, University of East Anglia, April 2021. Online forum.• Title: A different and tidier kitchen: can people with dementia perform tasks in a new environment?
Presenter: Julieta Camino
Dementia Open Forum, University of East Anglia, December 2020, University of East Anglia. Online forum.• Title: Carers’ daily strategies affect the performance of daily tasks in people with dementia.
Presenter: Julieta Camino
Regional Old Age Psychiatry development meeting -DeNDroN meeting (East of England Region), September 2021, NIHR Clinical Research Network. Online meeting.• Title: ‘A different and tidier kitchen: can people with dementia perform tasks in a new environment?’
Presenter: Julieta Camino
The UK Dementia Research Institute (DRI), Brain Seminar, December 2021, Imperial College London. Online meeting.REC name
London - Queen Square Research Ethics Committee
REC reference
16/LO/0544
Date of REC Opinion
10 May 2016
REC opinion
Further Information Favourable Opinion