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BACKGROUND: Interventions promoting social activity may reduce behavioural psychological symptoms and improve quality of life in people living with dementia. This study aimed to identify social benefits for participants living with dementia in the context of Promoting Activity, Independence and Stability in Early Dementia (PrAISED), an exercise intervention programme promoting physical activity and independence in participants living with dementia in England. METHODS: This was a multi-method realist evaluation undertaking secondary analysis of data collected during the PrAISED process evaluation, including qualitative interviews with participants with dementia, caregivers and therapists, personal notes of researchers, and video recordings of therapy sessions. The study consisted of four phases: (1) Setting operational definition of social outcomes in PrAISED; (2) Developing Context, Mechanisms, Outcome (CMO) configurations; (3) Testing and refining CMOs; and (4) Synthesising definitive CMOs into a middle range theory. RESULTS: Two CMOs were identified. (1) When therapists were able to make therapy sessions engaging and had the caregivers' support, the participants experienced therapy sessions as an opportunity to achieve goals in areas they were interested in. They also found the sessions enjoyable. This all led to the participants being highly engaged in their social interactions with the therapists. (2) When the participants realised that they were gaining benefits and progress through the PrAISED intervention, such as increased balance, this boosted their confidence in physical ability. It might also reduce caregivers' risk-aversion/gatekeeping attitude, which in turn would lead to participants' increased participation in social activities. CONCLUSION: The PrAISED intervention supported social participation in participants living with dementia. Under certain circumstances, home-based therapy interventions can be beneficial for social health (regardless of physical health gains). Given the limitations of currently available outcome measures to assess social participation, qualitative methods should be used to explore social health outcomes.
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Demencia , Participación Social , Humanos , Demencia/terapia , Demencia/psicología , Femenino , Masculino , Participación Social/psicología , Anciano , Servicios de Atención de Salud a Domicilio , Anciano de 80 o más Años , Terapia por Ejercicio/métodos , Calidad de Vida/psicología , Cuidadores/psicología , Vida IndependienteRESUMEN
Globally, more people are living into advanced old age, with age-associated frailty, disability and multimorbidity. Achieving equity for all ages necessitates adapting healthcare systems. Clinical practice guidelines (CPGs) have an important place in adapting evidence-based medicine and clinical care to reflect these changing needs. CPGs can facilitate better and more systematic care for older people. But they can also present a challenge to patient-centred care and shared decision-making when clinical and/or socioeconomic heterogeneity or personal priorities are not reflected in recommendations or in their application. Indeed, evidence is often lacking to enable this variability to be reflected in guidance. Evidence is more likely to be lacking about some sections of the population. Many older adults are at the intersection of many factors associated with exclusion from traditional clinical evidence sources with higher incidence of multimorbidity and disability compounded by poorer healthcare access and ultimately worse outcomes. We describe these challenges and illustrate how they can adversely affect CPG scope, the evidence available and its summation, the content of CPG recommendations and their patient-centred implementation. In all of this, we take older adults as our focus, but much of what we say will be applicable to other marginalised groups. Then, using the established process of formulating a CPG as a framework, we consider how these challenges can be mitigated, with particular attention to applicability and implementation. We consider why CPG recommendations on the same clinical areas may be inconsistent and describe approaches to ensuring that CPGs remain up to date.
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Medicina Basada en la Evidencia , Atención Dirigida al Paciente , Guías de Práctica Clínica como Asunto , Humanos , Anciano , Atención Dirigida al Paciente/normas , Medicina Basada en la Evidencia/normas , Multimorbilidad , Envejecimiento , Factores de Edad , Anciano de 80 o más AñosRESUMEN
This paper examines how terms of endearment (ToE) are used as a mitigation device in interactions between staff and people living with dementia (PLWD) in the acute hospital environment. ToE are often discouraged in training for healthcare staff. However, this research demonstrates that they are still commonly used in practice. Using conversation analysis, video and audio data were examined to identify the interactional functions of ToE. Analysis showed that ToE play an important role in mitigating potentially face-threatening actions such as when patients are asked to repeat hard-to-interpret talk, or when patient agency is compromised through instruction sequences or having necessary healthcare tasks undertaken. The success of this mitigation is sensitive to the specific interactional circumstances, as well as the responsiveness of the HCP to the patient's voiced concerns. These findings have implications for healthcare practice, training and wider care of PLWD.
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BACKGROUND: Despite several interventions demonstrating benefit to people living with dementia and their caregivers, few have been translated and implemented in routine clinical practice. There is limited evidence of the barriers and facilitators for commissioning and implementing health and social care interventions for people living with dementia. The aim of the current study was to explore the barriers and facilitators to commissioning and implementing health and social care interventions for people with dementia, using a dementia friendly exercise and physical activity-based intervention (PrAISED [Promoting Activity, Stability and Independence in Early Dementia and Mild Cognitive Impairment]) as a case study. METHODS: Qualitative semi-structured interviews were conducted with stakeholders from a range of backgrounds including individuals from health and social care, local government, the voluntary and community sector, universities, and research centres in England. The Consolidated Framework for Intervention Research (CFIR) was used to guide the design and analysis. RESULTS: Fourteen participants took part, including commissioning managers, service managers, partnership managers, charity representatives, commercial research specialists, academics/researchers, and healthcare professionals. Data were represented in 33 constructs across the five CFIR domains. Participants identified a need for greater support for people diagnosed with dementia and their caregivers immediately post dementia diagnosis. Key barriers included cost/financing, the culture of commissioning, and available resources. Key facilitators included the adaptability of the intervention, cosmopolitanism/partnerships and connections, external policy and incentives, and the use of already existing (and untapped) workforces. CONCLUSION: Several barriers and facilitators for commissioning and implementing health and social care interventions for people with dementia were identified which need to be addressed. Recommended actions to facilitate the commissioning and implementation of dementia friendly services are: 1) map out local needs, 2) evidence the intervention including effectiveness and cost-effectiveness, 3) create/utilise networks with stakeholders, and 4) plan required resources.
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INTRODUCTION: Individuals with dementia face an increased risk of falls. Falls can cause a decline in the individual's overall functionality. All types of falls, including those that do not result in injury, can lead to psychosocial consequences, such as diminished confidence and a fear of falling. Projections indicate a rising trend in dementia diagnoses, implying an increase in fall incidents. Yet, there is a lack of evidence to support interventions for people living with dementia who have fallen. Our objective is to test the feasibility of a falls intervention trial for people with dementia. METHOD AND ANALYSIS: This is a UK-based two-arm pilot cluster randomised controlled trial. In this study, six collaborating sites, which form the clusters, will be randomly allocated to either the intervention arm or the control arm (receiving treatment as usual) at a 1:1 ratio. During the 6 month recruitment phase, each cluster will enrol 10 dyads, comprising 10 individuals with dementia and their respective carers, leading to a total sample size of 60 dyads. The primary outcomes are the feasibility parameters for a full trial (ie, percentage consented, follow-up rate and cost framework). Secondary outcomes include activities of daily living, quality of life, fall efficacy, mobility, goal attainment, cognitive status, occurrence of falls, carer burden and healthcare service utilisation. Outcome measures will be collected at baseline and 28 weeks, with an additional assessment scheduled at 12 weeks for the healthcare service utilisation questionnaire. An embedded process evaluation, consisting of interviews and observations with participants and healthcare professionals, will explore how the intervention operates and the fidelity of study processes. ETHICS AND DISSEMINATION: The study was approved by the NHS and local authority research governance and research ethics committees (NHS REC reference: 23/WA/0126). The results will be shared at meetings and conferences and will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ISRCTN16413728.
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Actividades Cotidianas , Demencia , Humanos , Demencia/terapia , Miedo , Calidad de Vida/psicología , Ensayos Clínicos Controlados Aleatorios como Asunto , Reino Unido , Estudios Multicéntricos como AsuntoRESUMEN
OBJECTIVE: To determine the effectiveness of an exercise and functional activity therapy intervention in adults with early dementia or mild cognitive impairment compared with usual care. DESIGN: Randomised controlled trial. SETTING: Participants' homes and communities at five sites in the United Kingdom. PARTICIPANTS: 365 adults with early dementia or mild cognitive impairment who were living at home, and family members or carers. INTERVENTION: The intervention, Promoting activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED), was a specially designed, dementia specific, rehabilitation programme focusing on strength, balance, physical activity, and performance of activities of daily living, which was tailored and progressive and addressed risk and the psychological needs of people with dementia. Up to 50 therapy sessions were provided over 12 months. The control group received usual care plus a falls risk assessment. Procedures were adapted during the covid-19 pandemic. MAIN OUTCOME MEASURES: The primary outcome was score on the carer (informant) reported disability assessment for dementia scale 12 months after randomisation. Secondary outcomes were self-reported activities of daily living, physical activity, quality of life, balance, functional mobility, fear of falling, frailty, cognition, mood, carer strain, service use at 12 months, and falls between months 4 and 15. RESULTS: 365 patient participants were randomised, 183 to intervention and 182 to control. The median age of participants was 80 years (range 65-95), median Montreal cognitive assessment score was 20 out of 30 (range 13-26), and 58% (n=210) were men. Intervention participants received a median of 31 therapy sessions (interquartile range 22-40) and reported completing a mean 121 minutes of PrAISED exercise each week. Primary outcome data were available for 149 intervention and 141 control participants. Scores on the disability assessment for dementia scale did not differ between groups: adjusted mean difference -1.3, 95% confidence interval -5.2 to 2.6; Cohen's d effect size -0.06, 95% confidence interval -0.26 to 0.15; P=0.51). Upper 95% confidence intervals excluded small to moderate effects on any of the range of outcome measures. Between months 4 and 15 the intervention group experienced 79 falls and the control group 200 falls (adjusted incidence rate ratio 0.78, 95% confidence interval 0.5 to 1.3; P=0.3). CONCLUSION: The intensive PrAISED programme of exercise and functional activity training did not improve activities of daily living, physical activity, or quality of life; reduce falls; or improve any other secondary health status outcomes, despite good uptake. Future research should consider alternative approaches to maintaining ability and wellbeing in people with dementia. TRIAL REGISTRATION: ISRCTN Registry ISRCTN15320670.
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COVID-19 , Disfunción Cognitiva , Demencia , Adulto , Masculino , Humanos , Anciano , Anciano de 80 o más Años , Femenino , Accidentes por Caídas/prevención & control , Actividades Cotidianas , Miedo , Pandemias , Calidad de Vida , Disfunción Cognitiva/terapia , Demencia/terapiaRESUMEN
Palliative sedation is a medical intervention to manage distress in dying patients, by reducing consciousness when symptom-directed therapies fail. Continuous deep sedation is ethically sensitive because it may shorten life and completely prevents communication. But sedation short of this is also common. There has been a steady increase in the use of sedation over recent decades. Sedation may have become a means to die while sleeping, rather than a method of last resort to alleviate suffering. Sedation may be requested or expected by patients, families or staff. The need for sedation may be being interpreted more loosely. The acceptance of a 'tolerable amount of discomfort' may have lost ground to a desire to get the final phase over with quickly. Sedation is not always a bad thing. Medical care is otherwise unable to completely control all distressing symptoms in every patient. Sedation may result from other necessary symptom control drugs. Dying when sedated can be seen by as 'peaceful'. We feel it is necessary, however, to highlight three caveats: the need to manage expectations, the cost in terms of loss of communication, and the grey area between continuous deep sedation and euthanasia. We conclude that there may be good grounds for sedation in palliative care, and in some cases, continuous deep sedation may be used as a last resort. But the criteria of necessary and proportionate drug treatment should remain. The normalisation of sedation into dying while sleeping should be resisted.
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Comunicación , Estado de Conciencia , Humanos , Emociones , Cuidados Paliativos , SueñoRESUMEN
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.
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COVID-19 , Demencia , Humanos , Actividades Cotidianas , Pandemias , Calidad de Vida , Demencia/diagnóstico , Demencia/terapiaRESUMEN
BACKGROUND: Actors portraying simulated patients are widely used in communication skills training in healthcare, but debates persist over the authenticity of these interactions. However, healthcare professionals value simulation-based training because of the opportunity to think and react in real time, which alternatives cannot provide. OBJECTIVE: To describe a method for the use of simulation which maximises authenticity by grounding training in real, observed, patterns of patient communication. DESIGN: Naturally occurring care interactions were video recorded and analysed using conversation analysis (CA) to identify communication patterns. We focused on sites of recurring interactional trouble as areas for training, and identified more and less effective ways of dealing with these. We used the CA findings to train actors portraying simulated patients, based on the observed interactional patterns. SETTINGS AND PARTICIPANTS: Patients living with dementia and healthcare practitioners (HCPs) on two acute healthcare of the elderly wards in the English East Midlands. OUTCOME MEASURES: One month later HCPs reported using the skills learned in clinical practice. Masked-ratings of before and after simulated patient encounters confirmed these self-reports in relation to one key area of training. RESULTS: The Conversation Analysis Based Simulation (CABS) method used in this setting showed positive results across a range of quantitative and qualitative outcome measures. What is significant for the transferability of the method is that qualitative feedback from trainees highlighted the ability of the method to not only illuminate their existing effective practices, but to understand why these were effective and be able to articulate them to others. DISCUSSION/CONCLUSION: While the CABS method was piloted in the dementia care setting described here, it has potential applicability across healthcare settings where simulated consultations are used in communication skills training. Grounding simulated interaction in the observed communication patterns of real patients is an important means of maximising authenticity. PATIENT AND PUBLIC CONTRIBUTION: The VideOing to Improve dementia Communication Education (VOICE) intervention which piloted the CABS method was developed by a multidisciplinary team, including three carers of people with dementia. People living with dementia were involved in the rating of the before and after video simulation assessments.
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Comunicación , Demencia , Humanos , Anciano , Cuidadores/educación , Atención a la Salud , Personal de Salud/educación , Demencia/terapiaRESUMEN
PURPOSE: To investigate the longitudinal associations between pain and depressive symptoms in adults. METHODS: Prospective cohort study on data from 28,515 community-dwelling adults ≥ 50 years, free from depression at baseline (Wave 5), with follow-up in Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE). Significant depressive symptoms were defined by a EURO-D score ≥ 4. The longitudinal association between baseline pain intensity and significant depressive symptoms at follow-up was analysed using logistic regression models; odds ratios (ORs) and confidence intervals (CI) were calculated, adjusting for socio-demographic and clinical factors, physical inactivity, loneliness, mobility and functional impairments. RESULTS: Mean age was 65.4 years (standard deviation 9.0, range 50-99); 14,360 (50.4%) participants were women. Mean follow-up was 23.4 (standard deviation 3.4) months. At baseline, 2803 (9.8%) participants reported mild pain, 5253 (18.4%) moderate pain and 1431 (5.0%) severe pain. At follow-up, 3868 (13.6%) participants-1451 (10.3%) men and 2417 (16.8%) women-reported significant depressive symptoms. After adjustment, mild, moderate and severe baseline pain, versus no pain, were associated with an increased likelihood of significant depressive symptoms at follow-up: ORs (95% CI) were 1.20 (1.06-1.35), 1.32 (1.20-1.46) and 1.39 (1.19-1.63), respectively. These associations were more pronounced in men compared to women, and consistent in participants aged 50-64 years, those without mobility or functional impairment, and those without loneliness at baseline. CONCLUSION: Higher baseline pain intensity was longitudinally associated with a greater risk of significant depressive symptoms at 2-year follow-up, in community-dwelling adults without baseline depression.
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Depresión , Jubilación , Anciano , Femenino , Humanos , Masculino , Envejecimiento , Depresión/epidemiología , Europa (Continente)/epidemiología , Estudios de Seguimiento , Encuestas Epidemiológicas , Vida Independiente , Estudios Longitudinales , Dolor/epidemiología , Dimensión del Dolor , Estudios Prospectivos , Persona de Mediana EdadRESUMEN
OBJECTIVES: Constant observation is used in hospitals with people with dementia to manage their safety. However, opportunities for proactive care are not consistently recognised or utilised. A systematic review of constant observation was conducted to understand measures of effectiveness and facilitators for person-centred approaches. METHOD: Electronic databases were searched between 2010 and 2022. Four reviewers completed screening, quality assessments and data extraction with 20% checked for consistency. Findings were presented through narrative synthesis (PROSPERO registration CRD42020221078). FINDINGS: Twenty-four studies were included. Non-registered staff without specific training were the main providers of constant observation. Assessments and processes clarifying the level of observation encouraged reviews that linked initiation and discontinuation to a patient's changing needs. Examples of person-centred care, derived from studies of volunteers or staff employed to provide activities, demonstrated meaningful engagement could reassure a person and improve their mood. Proactive approaches that anticipated distress were thought to reduce behaviours that carried a risk of harm but supporting evidence was lacking. CONCLUSION: Non-registered staff are limited by organisational efforts to reduce risk, leading to a focus on containment. Trained staff who are supported during constant observation can connect with patients, provide comfort and potentially reduce behaviours that carry a risk of harm.
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Demencia , Humanos , Demencia/terapia , Hospitales , Atención Dirigida al PacienteRESUMEN
Background: Survivors of common infections may develop cognitive impairment or dementia; however, the risk of these conditions in people hospitalised with pneumonia is not well established. Methods: A matched cohort study was conducted using Hospital Episode Statistics (HES) data linked to the Clinical Practice Research Database (CPRD). Adults with the first International Classification of Diseases (10th Revision) code for pneumonia recorded in the HES between 1 July 2002 and 30 June 2017 were included, and up to four controls without hospitalisation for pneumonia in the CPRD were matched by sex, age and practice. Cognitive impairment and dementia incidence rates were calculated and survival analysis was performed comparing those hospitalised with pneumonia to the general population. Results: The incidence rates of cognitive impairment and dementia were 18 (95% CI 17.3-18.7) and 13.2 (95% CI 13-13.5) per 1000â person-years among persons previously hospitalised with pneumonia and the matched cohort respectively. People previously hospitalised with pneumonia had 53% higher incidence of cognitive impairment and dementia (adjusted hazard ratio (aHR) 1.53, 95% CI 1.46-1.61) than their matched cohort. The highest incidence was observed within 1â year of hospitalisation for pneumonia compared to the general population (aHR 1.89, 95% CI 1.75-2.05). Age modified the effect of hospitalisation for pneumonia on cognitive impairment and dementia such that the size of effect was stronger in people between 45 and 60â years old (p-value for interaction <0.0001). Conclusion: Cognitive impairment and dementia are more likely to be diagnosed in people who have been hospitalised for pneumonia, especially in the first year after discharge, than in the general population.
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BACKGROUND: apathy, defined as reduced goal-directed activity, interests and emotion, is highly prevalent in neurocognitive disorders (NCDs). Apathy has important consequences for the individuals who experience it and their carers, yet the lived experiences of apathy in this population are not well understood. OBJECTIVE: to explore how people with NCDs and their carers understand and experience apathy. METHOD: in-depth semi-structured interviews were conducted in participants' homes. Sixteen people with NCDs (dementia or mild cognitive impairment) and 14 carers, living in four geographical areas of England, took part. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using reflexive thematic analysis. RESULTS: four themes were generated: 'Apathy is Poorly Understood'; 'Too much trouble: Mediating Effort and Outcome'; 'Preserving Identity in the Face of Loss of Capability and Autonomy' and 'Opportunity and Exclusion'. CONCLUSION: apathy is experienced as an understandable response to the everyday struggle people with NCDs face to preserve identity in the face of threats to capability and autonomy and is exacerbated by the lack of support and opportunities. Social and environmental modifications may help reduce apathy. In line with previous qualitative research, this challenges the dominant view of apathy as a neuropsychiatric symptom that excludes the social-environmental context.
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Apatía , Demencia , Humanos , Cuidadores/psicología , Demencia/psicología , Trastornos Neurocognitivos , Investigación CualitativaRESUMEN
Pain is common in people with dementia, and pain can exacerbate the behavioural and psychological symptoms of dementia. Effective pain management is challenging, not least in people with dementia. Impairments of cognition, communication and abstract thought can make communicating pain unreliable or impossible. It is unclear which biopsychosocial interventions for pain management are effective in people with dementia, and which interventions for behavioural and psychological symptoms of dementia are effective in people with pain. The result is that drugs, physical therapies and psychological therapies might be either underused or overused. People with dementia and pain could be helped by assessment processes that characterise an individual's pain experience and dementia behaviours in a mechanistic manner, phenotyping. Chronic pain management has moved from a 'one size fits all' approach, towards personalised medicine, where interventions recommended for an individual depend upon the key mechanisms underlying their pain, and the relative values they place on benefits and adverse effects. Mechanistic phenotyping through careful personalised evaluation would define the mechanisms driving pain and dementia behaviours in an individual, enabling the formulation of a personalised intervention strategy. Central pain processing mechanisms are particularly likely to be important in people with pain and dementia, and interventions to accommodate and address these may be particularly helpful, not only to relieve pain but also the symptoms of dementia.
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Dolor Crónico , Demencia , Humanos , Manejo del Dolor , Demencia/complicaciones , Demencia/diagnóstico , Demencia/terapia , Dolor Crónico/diagnóstico , Dolor Crónico/terapia , FenotipoRESUMEN
BACKGROUND: The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) intervention is a programme of physical activity and exercise designed to maintain participation in activities of daily living, mobility, and quality of life for people living with dementia. During the COVID-19 pandemic first national lockdown in England, the PrAISED physiotherapists, occupational therapists, and rehabilitation support workers adapted to delivering the intervention remotely via telephone or video conferencing. OBJECTIVE: The aim of this study was to explore therapists' experience of delivering the PrAISED intervention during the COVID-19 pandemic and derive implications for clinical practice. METHODS: Qualitative semi-structured interviews were conducted with 16 therapists using purposive sampling. Thematic analysis was used to analyze the transcripts. RESULTS: Therapists reported a change in the relationship between themselves, the person with dementia and the caregiver, with an increased reliance on the caregiver and a loss of autonomy for the person living with dementia. There was concern that this would increase the burden on the caregiver. The therapists reported using creativity to adapt to different modes of delivery. They felt their sessions were mostly focused on providing social and emotional support, and that assessing, progressing, and tailoring the intervention was difficult. CONCLUSION: It is possible to deliver some elements of a physical intervention using remote delivery, but a dual modal approach including remote and face-to-face delivery would optimize treatment efficacy. Educational support would be required to enable people living with dementia and their caregivers to overcome barriers relating to digital literacy.