Dataset Information

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

ABSTRACT:

Background

The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial showed no measurable benefits in activities of daily living, physical activity or quality of life.

Objective

To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so.

Methods

A process evaluation using qualitative methods, comprising interviews and researcher notes.

Setting

Data were collected in participants' homes or remotely by telephone or videoconferencing.

Sample

A total of 88 interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. A total of 69 interviews were conducted with 26 therapists.

Results

Participants valued the intervention as proactively addressing health issues that were of concern to them, and as a source of social contact, interaction, information and advice. Facilitators to achieving positive outcomes included perceiving progress towards desired goals, positive expectations, therapists' skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carry-over between sessions; chronic physical health problems and intercurrent acute illness and injury; 'tapering' (progressively infrequent supervision intended to help develop habits and independent activity); and the COVID-19 pandemic.

Conclusions

Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame 'health gain' and trial outcomes.

SUBMITTER: Di Lorito C

PROVIDER: S-EPMC10442073 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature

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Publications

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

Di Lorito Claudio C van der Wardt Veronika V Pollock Kristian K Howe Louise L Booth Vicky V Logan Pip P Gladman John J Masud Tahir T das Nair Roshan R Goldberg Sarah S Vedhara Kavita K O'Brien Rebecca R Adams Emma E Cowley Alison A Bosco Alessandro A Hancox Jennie J Burgon Clare C Bajwa Rupinder R Lock Juliette J Long Annabelle A Godfrey Maureen M Dunlop Marianne M Harwood Rowan H RH

Age and ageing 20230801 8

<h4>Background</h4>The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial showed no measurable benefits in activities of daily living, physical activity or quality of life.<h4>Objective</h4>To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so. ...[more]

PMID: 37603841

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Project description:BackgroundWe tested the feasibility of delivering and evaluating a complex therapy intervention which aimed to promote activity and independence for people with early dementia (PrAISED). Feasibility questions were on: recruitment, randomisation, intervention delivery, adherence and withdrawals, level of supervision required, adverse events, data collection and sample size assumptions.MethodsWe conducted a three-arm, multi-site, single-blind, randomised controlled feasibility trial. Eligibility criteria were aged 65 years or older, diagnosed mild dementia or mild cognitive impairment, able to walk without human help, and communicate in English, no co-morbidities that prevented participation in cognitive assessment and capacity to give consent. Participants were recruited from Memory Assessment Service clinics and the 'Join Dementia Research' register. Patient participants were randomised 1:1:1 to a high intensity supervision PrAISED intervention, moderate intensity supervision PrAISED intervention or brief falls prevention assessment and advice (control). The PrAISED intervention aimed for participants to complete three hours of PrAISED exercises a week for 12 months. It included individualised activity and exercise plans and supervised exercises with regular re-assessment and progression, and was delivered by occupational therapists, physiotherapists and rehabilitation support workers. Primary efficacy outcome was the Disability Assessment for Dementia (DAD), measured after 12 months. Secondary outcomes included physical activity, quality of life, mood, cognition, strength, balance, rate of falls, frailty and carer strain. Falls and activity were ascertained by monthly diary.ResultsBetween September 2016 and March 2017 we recruited 60 patient participants and 54 carer participants from two sites. Forty-nine patient participants completed a follow-up interview. Feasibility outcomes were mostly satisfactory, including recruitment and retention, intervention delivery and data completeness for most scales used. We could not maintain blinding of researchers at follow-up and experienced difficulties collecting data using some questionnaires and devices. Participants only completed a mean 77 (moderate supervision) and 71 (high supervision) minutes per week of PrAISED exercises over 12 months. We recorded 19 adverse events, none serious and related to the intervention.ConclusionWe conclude that with some adjustments to the trial protocol, it is feasible to deliver the PrAISED intervention and conduct a trial.Trial registrationClinicalTrials.gov: NCT02874300 (first posted 22nd August 2016), ISRCTN: 10550694 (date assigned 31st August 2016).

Project description:This series of articles for rehabilitation in practice aims to cover a knowledge element of the rehabilitation medicine curriculum. Nevertheless, they are intended to be of interest to a multidisciplinary audience. The competency addressed in this article is an understanding of how to develop an intervention for people with mild cognitive impairment and dementia to promote their independence, stability, and physical activity.IntroductionOlder adults with dementia are at a high risk of falls. Standard interventions have not been shown to be effective in this patient population potentially due to poor consideration of dementia-specific risk factors. An intervention is required that addresses the particular needs of older people with dementia in a community setting.MethodsWe followed guidelines for the development of an intervention, which recommend a structured approach considering theory, evidence and practical issues. The process used 15 information sources. Data from literature reviews, clinician workshops, expert opinion meetings, patient-relative interviews, focus groups with people with dementia and clinicians, a cross-sectional survey of risk factors, a pre-post intervention study and case studies were included. Data were synthesized using triangulation to produce an intervention suitable for feasibility testing. Practical consideration of how an intervention could be delivered and implemented were considered from the outset.ResultsElements of the intervention included individually tailored, dementia-appropriate, balance, strength and dual-task exercises, functional training, and activities aimed at improving environmental access, delivered using a motivational approach to support adherence and long-term continuation of activity. We focussed on promoting safe activity rather than risk or prevention of falls.ConclusionWe used a systematic process to develop a dementia-specific intervention to promote activity and independence while reducing falls risk in older adults with mild dementia.

Project description:BackgroundOlder adults with dementia are at a high risk of losing abilities and of accidental falls. Promoting Activity, Independence and Stability in Early Dementia (PrAISED) is a 12-month person-centred exercise and activity programme which aims to increase activity and independence whilst reducing falls in people with early dementia. In this patient group, as well as many others, poor adherence to exercise interventions can undermine treatment effectiveness. We aimed to explore patterns of barriers and facilitators influencing PrAISED participants' adherence to home-based strength and balance exercises.MethodsParticipants were a subsample of 20 individuals with mild cognitive impairment or early dementia and their carer(s) taking part in the PrAISED programme. Participants (with the support of a carer where necessary) kept a daily exercise diary. Participants' adherence were categorised based upon reported number of times a week they undertook the PrAISED strength and balance exercises over a 4 month period (<3 times a week = low adherence, 3-4 = meeting adherence expectations, >5 = exceeding adherence expectations). Semi-structured interviews were conducted in month 4 of the PrAISED programme to explore barriers and facilitators to adherence. A mixture of deductive and inductive thematic analysis was employed with themes categorised using the Theoretical Domains Framework.FindingsParticipants completed on average 98 minutes of home-based strength and balance exercises per week, 3.8 sessions per week, for an average of 24 minutes per session. Five participants were categorised as exceeding adherence expectations, 7 as meeting adherence expectations, and 8 as low adherers. Analysis of interview data based on self-reported adherence revealed six interacting themes: 1) routine, 2) practical and emotional support, 3) memory support, 4) purpose, 5) past experiences of sport and exercise, and 6) belief in and experience of benefits.ConclusionsIdentifiable cognitive, psychological, and practical factors influence adherence to exercise, and should be addressed in future development of interventions with this population.

Project description:BackgroundPeople with dementia progressively lose cognitive and functional abilities. Interventions promoting exercise and activity may slow decline. We developed a novel intervention to promote activity and independence and prevent falls in people with mild cognitive impairment (MCI) or early dementia. We successfully undertook a feasibility randomised controlled trial (RCT) to refine the intervention and research delivery. We are now delivering a multi-centred RCT to evaluate its clinical and cost-effectiveness.MethodsWe will recruit 368 people with MCI or early dementia (Montreal Cognitive Assessment score 13-25) and a family member or carer from memory assessment clinics, other community health or social care venues or an online register (the National Institute for Health Research Join Dementia Research). Participants will be randomised to an individually tailored activity and exercise programme delivered using motivational theory to promote adherence and continued engagement, with up to 50 supervised sessions over one year, or a brief falls prevention assessment (control). The intervention will be delivered in participants' homes by trained physiotherapists, occupational therapists and therapy assistants. We will measure disabilities in activities of daily living, physical activity, balance, cognition, mood, quality of life, falls, carer strain and healthcare and social care use. We will use a mixed methods approach to conduct a process evaluation to assess staff training and delivery of the intervention, and to identify individual- and context-level mechanisms affecting intervention engagement and activity maintenance. We will undertake a health economic evaluation to determine if the intervention is cost-effective.DiscussionWe describe the protocol for a multi-centre RCT that will evaluate the clinical and cost-effectiveness of a therapy programme designed to promote activity and independence amongst people living with dementia.Trial registrationISRCTN, ISRCTN15320670. Registered on 4 September 2018.

Project description:BackgroundThe potential decrease in daily physical activity associated with the COVID-19 pandemic lockdowns may have a negative impact on people living with dementia. Given the limited literature around the effects of home confinement in people living with dementia, this study investigated changes in physical exercise levels of participants in the intervention arm of the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomised Controlled Trial during the first COVID-19 national lockdown. It hypothesised that participants would maintain physical exercise levels.MethodsA repeated measure (three time points) study involving 30 participants (mean age = 78.0 years, 15 male and 15 female, 22 (73.0%) living with their primary caregiver), from four regions in England receiving the PrAISED intervention. PrAISED is an individually tailored intervention of physical exercises and functional activities. Trained therapists deliver therapy sessions over a period of 52 weeks. Study participants received therapy sessions via phone or video calling during the COVID-19 lockdown. This study investigated self-reported minutes of physical exercise recorded on study calendars for the months of February (i.e., baseline - pre-lockdown), May (i.e., T1 - during lockdown), and August (i.e., T2-post-lockdown) 2020.ResultsParticipants reported a statistically significant increase in activity levels between February and May (Wilcoxon Z = -2.013, p = 0.044) and a statistically significant decrease between May and August (Wilcoxon Z = -2.726, p = 0.004). No significant difference was found in the physical activity levels from pre- to post-lockdown (Wilcoxon Z = 0.485, p = 0.620).ConclusionDespite concerns that the restrictions associated with the COVID-19 pandemic might lead to reductions in physical exercise, participants in receipt of the PrAISED intervention increased their amount of physical exercise during lockdown. Our findings support the potential of remote support for people living with dementia to help them maintain physical exercise levels in circumstances where face-to-face service provision is not possible.Trial registrationThe PrAISED trial and process evaluation have received ethical approval number 18/YH/0059 from the Bradford/Leeds Ethics Committee. The Clinical Trial Identifier for PrAISED is: ISRCTN15320670 ( https://doi.org/10.1186/ISRCTN15320670 ). Registration was made on 04/09/2018.

Project description:BACKGROUND:With rural population aging there are growing numbers of people with dementia in rural and remote settings. The role of primary health care (PHC) is critical in rural locations, yet there is a lack of rural-specific PHC models for dementia, and little is known about factors influencing the development, implementation, and sustainability of rural PHC interventions. Using a community-based participatory research approach, researchers collaborated with a rural PHC team to co-design and implement an evidence-based interdisciplinary rural PHC memory clinic in the Canadian province of Saskatchewan. This paper reports barriers and facilitators to developing, implementing, and sustaining the intervention. METHODS:A qualitative longitudinal process evaluation was conducted over two and half years, from pre- to post-implementation. Data collection and analyses were guided by the Consolidated Framework for Implementation Research (CFIR) which consists of 38 constructs within five domains: innovation characteristics, outer setting, inner setting, individual characteristics, and process. Data were collected via focus groups with the PHC team and stakeholders, smaller team workgroup meetings, and team member interviews. Analysis was conducted using a deductive approach to apply CFIR codes to the data and an inductive analysis to identify barriers and facilitators. RESULTS:Across all domains, 14 constructs influenced development and implementation. Three domains (innovation characteristics, inner setting, process) were most important. Facilitators were the relative advantage of the intervention, ability to trial on a small scale, tension for change, leadership engagement, availability of resources, education and support from researchers, increased self-efficacy, and engagement of champions. Barriers included the complexity of multiple intervention components, required practice changes, lack of formal incentive programs, time intensiveness of modifying the EMR during iterative development, lack of EMR access by all team members, lack of co-location of team members, workload and busy clinical schedules, inability to justify a designated dementia care manager role, and turnover of PHC team members. CONCLUSIONS:The study identified key factors that supported and hindered the development and implementation of a rural-specific strategy for dementia assessment and management in PHC. Despite challenges related to the rural context, the researcher-academic partnership was successful in developing and implementing the intervention.

Project description:BackgroundLewy body dementia (LBD) is an aggressive type of dementia of rapid, fluctuating disease trajectory, higher incidence of adverse events, and poorer functional independence than observed in Alzheimer's disease dementia. Non-pharmacological treatments such as progressive, high-intensity exercise are effective in other neurological cohorts but have been scarcely evaluated in LBD.MethodsThe Promoting Independence in Lewy Body Dementia through Exercise (PRIDE) trial was a non-randomised, non-blinded, crossover pilot trial involving older adults with LBD consisting of a baseline assessment, an 8-week wait-list, and an 8-week exercise intervention. The aims of this study were to evaluate the determinants of the primary outcome functional independence, as measured by the Movement Disorder Society Unified Parkinson's Disease Rating Scale, and the feasibility and preliminary efficacy of an exercise intervention on this outcome. Additionally, important clinical characteristics were evaluated to explore associations and treatment targets. The exercise intervention was supervised, clinic-based, high-intensity progressive resistance training (PRT), challenging balance, and functional exercises, 3 days/week.ResultsNine participants completed the baseline cross-sectional study, of which five had a diagnosis of Parkinson's disease dementia (PDD), and four dementia with Lewy Bodies (DLB). Six completed the exercise intervention (three PDD, three DLB). The cohort was diverse, ranging from mild to severe dementia and living in various residential settings. Greater functional independence at baseline was significantly associated with better physical function, balance, cognition, quality of life, muscle mass ratio, walking endurance, faster walking speed and cadence, and lower dementia severity (p < 0.05). Participants declined by clinically meaningful amounts in functional independence, cognition, physical function, muscle mass, and weight over the wait-list period (p < 0.05). Following exercise, participants improved by clinically meaningful amounts in functional independence, cognition, physical function, and strength (p < 0.05). Progressive, high intensity exercise was well-tolerated (> 80% adherence), and only one minor exercise-related adverse event occurred.ConclusionsPRIDE is the first exercise trial conducted specifically within individuals diagnosed with LBD, and provides important insight for the design of larger, randomized trials for further evaluation of progressive, high-intensity exercise as a valuable treatment in LBD.Trial registrationThe PRIDE trial protocol has previously been prospectively registered (08/04/2016, ANZCTR: ACTRN12616000466448).

Project description:BACKGROUND:Memory services often see people with early stage dementia who are largely independent and able to participate in community activities but who run the risk of reducing activities and social networks. PRIDE is a self-management intervention designed to promote living well and enhance independence for people with mild dementia. This study aims to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention offered in addition to usual care or with usual care alone. METHODS/DESIGN:PRIDE is a parallel, two-arm, multicentre, feasibility, randomised controlled trial (RCT). Eligible participants aged 18 or over who have mild dementia (defined as a score of 0.5 or 1 on the Clinical Dementia Rating Scale) who can participate in the intervention and provide informed consent will be randomised (1:1) to treatment with the PRIDE intervention delivered in addition to usual care, or usual care only. Participants will be followed-up at 3 and 6 month's post-randomisation. There will be an option for a supporter to join each participant. Each supporter will be provided with questionnaires at baseline and follow-ups at 3 to 6 months. Embedded qualitative research with both participants and supporters will explore their perspectives on the intervention investigating a range of themes including acceptability and barriers and facilitators to delivery and participation. The feasibility of conducting a full RCT associated with participant recruitment and follow-up of both conditions, intervention delivery including the recruitment, training, retention of PRIDE trained facilitators, clinical outcomes, intervention and resource use costs and the acceptability of the intervention and study related procedures will be examined. DISCUSSION:This study will assess whether a definitive randomised trial comparing the clinical and cost-effectiveness of whether the PRIDE intervention offered in addition to usual care is feasible in comparison to usual care alone, and if so, will provide data to inform the design and conduct of a future trial. TRIAL REGISTRATION:ISRCTN, ISRCTN11288961, registered on 23 October 2019, http://www.isrctn.com/ISRCTN12345678 Protocol V2.1 dated 19 June 2019.

Dataset Information

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

Background

Objective

Methods

Setting

Sample

Results

Conclusions

Publications

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

Similar Datasets

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