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Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

ABSTRACT: Background: People with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia regarding rehabilitation services. The aim of this study was to explore thoughts and beliefs about rehabilitation amongst people with dementia and their families.

Methods: Interviews with people with dementia and family members regarding their experience of care following diagnosis and their attitudes and beliefs about rehabilitation for dementia. Surveys with older people with cognitive impairment and/or a diagnosis of dementia to determine preferences for services and understanding of rehabilitation programs.

Results: Interviews with 13 participants (n?=?6 people living with dementia with mean age 60 and n?=?7 care partners) revealed gaps in care post diagnosis. People reported having to seek out services and frequently sought out services which were rehabilitative in nature. Survey data (n?=?91 participants, average age 82) showed that most people had heard of rehabilitation (92%) or had experience of rehabilitation (49%) at some point. There was a wide range of services identified as being beneficial. Rehabilitative interventions including case management, exercise and memory strategies were considered desirable.

Conclusions: People with dementia report having a wide variety of needs. There are gaps following diagnosis where people with dementia report having to seek out their own services. Some interview participants (who tended to be younger) clearly articulated the need for tailored interventions which maximised independence and quality of life. Survey participants, who were on average older, reported that they would participate in individually applicable rehabilitative therapies if they were available.

SUBMITTER: Laver KE

PROVIDER: S-EPMC7727118 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

Laver Kate E KE Crotty Maria M Low Lee-Fay LF Clemson Lindy L Whitehead Craig C McLoughlin James J Swaffer Kate K Cations Monica M

BMC geriatrics 20201209 1

<h4>Background</h4>People with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia regarding rehabilitation services. The aim of this study was to explore thoughts and beliefs about rehabilitation amongst people with dementia and ...[more]

PMID: 33297973

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Project description:BackgroundIndividuals with a parental family history of dementia have an increased risk of developing dementia because they share their genes as well as their psychosocial behaviour. Due to this increased risk and their experience with dementia, they may be particularly eager to receive information regarding dementia risk reduction (DRR). This study evaluated the knowledge, beliefs and attitudes towards dementia and DRR among descendants of people with dementia.MethodUsing a semi-structured topic guide, three focus group discussions were conducted consisting of 12 female (80%) and 3 male (20%) descendants of people with dementia with a mean (± SD) age of 48.8 (± 12) years. Focus group discussions were audio recorded and transcribed. Each transcript was analysed thoroughly, and where appropriate, a code was generated and assigned by two researchers independently. Then, similar codes were grouped together and categorized into themes.ResultsThe items in the topic guide could only be addressed after participants had been given the opportunity to share their experiences of having a parent with dementia. Participants were unaware or uncertain about the possibility of reducing the risk of developing dementia and therefore hesitant to assess their dementia risk without treatment options in sight. Moreover, participants indicated that their general practitioner only gave some information on heritability, not on DRR. Although participants identified a large number of modifiable risk factors as a group during the group discussions, they were eager to receive more information on dementia and DRR. In the end, participants adopted a more positive attitude towards a DRR programme and provided suggestions for the development of future DRR programmes.ConclusionsAlthough the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and DRR, sharing experiences of having a parent with dementia seemed a prerequisite for considering participants' own risk of developing dementia and participating in a DRR programme. Knowledge of dementia and DRR was limited. Due to unawareness of the possibility of reducing dementia risk, participants were hesitant about assessing their dementia risk. Group discussions positively changed the perception of dementia risk assessment and participants' willingness to participate in a DRR programme.

Project description:BackgroundPain in people with dementia is underdiagnosed and undertreated. General practitioners (GPs) play a pivotal role in dementia care but their perspectives on pain in people with dementia remains under-researched. The aim of this study was to explore GPs' knowledge and attitudes towards pain assessment and management in people with dementia.MethodsThis was a descriptive cross-sectional study. A questionnaire was adapted from a previous study and piloted with 5 GPs. The questionnaire was posted to a census sample of all GPs in Cork city and county in the southern region of Ireland. The questionnaire collected demographic information, responses to a series of Likert-type statements assessing GPs' knowledge and attitudes, and provided an opportunity for the GP to give qualitative feedback on their experiences of managing pain in dementia. SPSS v25 was used for statistical analysis. Qualitative responses were thematically analysed.ResultsOf the 320 questionnaires posted, 157 completed questionnaires were returned (response rate of 49%). The sample was representative of GPs nationally in terms of years in GP practice and practice location. Over two-thirds (108/157) of respondents had a nursing home commitment. Only 10% of respondents (16/157) were aware of any dementia-specific pain assessment tools. The larger the nursing home commitment of the GP the more likely they were to be familiar with these tools (p = 0.048). The majority of respondents (113/157) believed people with dementia could not self-report pain. Respondents were uncertain about the safety of using opioid medications to treat pain in people with dementia with only 51.6% agreeing that they were safe. The qualitative comments highlighted the importance the GPs placed on surrogate reports of pain, GPs' uncertainty regarding the value of formal pain assessment tools and the challenges caused by under-resourcing in general practice.ConclusionThis study has highlighted aspects of pain assessment and management in dementia that GPs find challenging. Guidance on pain assessment and management in people with dementia do not appear to be translating into clinical practice. The findings will inform educational interventions being developed by our research team as part of the implementation of the Irish national dementia strategy. The knowledge and attitudes of general practitioners to the assessment and management of pain in people with dementia.

Project description:BackgroundVolunteers have been a valuable resource in supporting people with dementia and their caregivers in the community. However, factors such as misconceptions, negative attitudes towards dementia, and a lack of motivation might impact the quality of volunteer care. The present paper aims to examine the effect of training and service provision on the knowledge and attitudes of volunteers towards dementia and the association between knowledge and attitudes with the levels of motivation to volunteer.MethodsThe present study is part of an effectiveness-implementation cluster randomized clinical hybrid trial using a music-with-movement intervention to promote the well-being of people with dementia and their informal caregivers. Volunteers were recruited to receive training to support the delivery of the intervention. Training and enrichment workshops were offered to volunteers during the one-year project. Before and after their training and service, the recruited volunteers were asked to complete the following assessments: Dementia Attitudes Scale, and the Alzheimer's Disease Knowledge Scale. The levels of motivation to volunteer was measured with Volunteer Functions Inventory at baseline. Wilcoxon signed-rank test and multiple regression test were applied for statistical analyses.ResultsA total of 107 volunteers were recruited, and 81 of them completed a mean period of 47.32 weeks of training and service. Significant improvements in their total score on the Alzheimer's Disease Knowledge Scale (p = .009) and Dementia Attitudes Scale (p < .001) were found. Dementia attitude (β = .57, p < .001) and knowledge (β = -.18, p = .038) were found to have the most significant association with the levels of motivation to be a volunteer at baseline.ConclusionsThe present study illustrated the importance of quality volunteer training and voluntary service in improving the dementia knowledge and attitudes of volunteers. It also shed light on the association between knowledge and attitudes with the levels of motivation to volunteer. Accordingly, future research and public health policymakers should address more efforts to amplify the advantage of volunteers as a vital asset in dementia care.Trial registrationNCT03575026 (ClinicalTrials.gov), First registration on 02/07/2018.

Project description:BackgroundPeople with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.MethodsThe views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256?h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.ResultsThrough the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.ConclusionsThis unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.

Project description:The aim of the study was to assess both patients' and their parents' knowledge of phenylketonuria (PKU) treatment and compliance with PKU diet.The study included 173 PKU patients aged 10-19 and 110 parents of PKU children who were enrolled in the study on the basis of questionnaire data. The study also included 45 patients aged ≥20.Our study demonstrated that only 45% (n = 74) of PKU patients knew daily Phe intake recommendations, 27% of patients (n = 41) knew the Phe content in a minimum of three out of four researched food products. Patients' knowledge concerning Phe intake (p = 0.0181) and the knowledge of selected food products (p = 0.041819) improved with age. We did not establish such a correlation in the group of PKU children's parents. Approximately 31% of patients and 22% of parents reported helplessness, which increased with the child's age, associated with the necessity to adhere to the diet; 30% of patients reported feeling ashamed of the fact that they could not eat all food products. Regardless of age, children were more likely than parents to report helplessness (p = 0.032005). Among patients, 41.40% declared that they would wish to select products unassisted but their parents did not permit them to do so. The question of whether parents teach children self-reliance in meal preparation was answered affirmatively by 98% of parents and only 81% of children (p = 0.0001).Our data demonstrated that parents' and children's knowledge concerning treatment recommendations and food products does not have a direct impact on attitude to the PKU diet. Limiting children's independence in meal selection, growing helplessness in the face of dietary adherence and shame resulting from the necessity to follow a different diet observed in PKU families are responsible for shaping and perpetuating a consistently negative attitude to the diet. The care of PKU paediatric patients requires consistent, long-term family and individual therapy which may counteract the effects of learned helplessness. In regard to the educational effort, a good parent-child relationship as well as the teaching of behaviours motivating patients to comply with the diet are of great importance.

Dataset Information

Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

Publications

Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

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