Views of people living with dementia and their carers on their present and future: A qualitative study

BACKGROUND: Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. METHODS: Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. RESULTS: Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. CONCLUSION: Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions

Intervention components in the self-management of Parkinson’s: A mixed-methods synthesis of qualitative and quantitative evidence

INTRODUCTION: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson’s showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson’s to date but identified several potentially useful components. AIM: To identify the key required components for self-management in people with Parkinson’s by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson’s. METHOD: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson’s to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson’s and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson’s specific self-management components against potential effectiveness from published RCTs of self-management interventions. RESULTS: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1–10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1–3 self-management components). CONCLUSION: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson’s. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful

Remote Consultations for People with Parkinson’s and Cognitive Impairment – A Qualitative Study with Patients, Caregivers and Healthcare Professionals

Background: The Covid-19 pandemic led to many consultations being conducted remotely. Cognitive impairment is recognised as a potential barrier to remote healthcare interactions and is common and heterogeneous in Parkinson’s. Research studies have shown remote consultations in Parkinson’s to be feasible, but little is known about real life experience, especially for those with cognitive impairment. We explored the experiences and perceptions of remote consultations for people with Parkinson’s and cognitive impairment. Objective: To explore the experiences of remote consultations for People with Parkinson’s and Cognitive Impairments, from the perspective of service users and professionals, and investigate considerations for future service delivery. Method: Semi-structured interviews were conducted remotely with 11 people with Parkinson’s and cognitive impairment, 10 family caregivers and 24 Healthcare Professionals in 2020-2021. Purposive sampling was used. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Four themes were identified: The Nature of Remote Interactions; Challenges Exacerbated by Being Remote; Expectation versus Reality; and Optimising for the Future. Remote consultations were considered to be ‘transactional’ and less personal, with difficulties building rapport, and different in role to in-person consultations. The loss of non-verbal communication and ability of Healthcare Professionals to ‘sense’ led to remote consultations being perceived as riskier by all groups. Issues arising from communication and cognitive impairment, balancing of the person with Parkinson’s and caregiver voice, and discussions of the future, affect this population specifically. Remote consultations were reported to have been more successful than anticipated in all three groups. Obstacles were not always as expected, for example age was less of a barrier than predicted. Video consultations were perceived as being preferable to telephone consultations by most participants, but not accessible to all people with Parkinson’s. With widespread expectation of ongoing remote consultations, potential improvements for these three groups and healthcare services were identified, including practice, preparation, increased awareness of issues, expectation management by Healthcare Professionals, and more time and flexibility for consultations. Conclusion: Advantages and challenges of remote consultations for this population are identified. Consultations could be improved with increased support, practice, preparation, awareness of issues, and more time and flexibility within services

Delivering Optimal Care to People with Cognitive Impairment in Parkinson’s Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives

Background: Cognitive impairment is common in Parkinson’s disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. // Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019–2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. // Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. // Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson’s disease and their use of digital health to do this

Introduction: Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective: The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods: Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020–2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions: Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds

Effectiveness of self-management interventions for long-term conditions in people experiencing socio-economic deprivation in high-income countries: a systematic review and meta-analysis

BACKGROUND: Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. METHODS: We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. RESULTS: The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (-0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. CONCLUSIONS: Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals

A Longitudinal Study of Symptoms of Oropharyngeal Dysphagia in an Elderly Community-Dwelling Population

Dysphagia has been estimated to affect around 8–16 % of healthy elderly individuals living in the community. The present study investigated the stability of perceived dysphagia symptoms over a 3-year period and whether such symptoms predicted death outcomes. A population of 800 and 550 elderly community-dwelling individuals were sent the Sydney Swallow Questionnaire (SSQ) in 2009 and 2012, respectively, where an arbitrary score of 180 or more was chosen to indicate symptomatic dysphagia. The telephone interview cognitive screen measured cognitive performance and the Geriatric Depression Scale measured depression. Regression models were used to investigate associations with dysphagia symptom scores, cognition, depression, age, gender and a history of stroke; a paired t test was used to examine if individual mean scores had changed. A total of 528 participants were included in the analysis. In 2009, dysphagia was associated with age (P = 0.028, OR 1.07, CI 1.01, 1.13) and stroke (P = 0.046, OR 2.04, CI 1.01, 4.11) but these associations were no longer present in 2012. Those who had symptomatic dysphagia in 2009 (n = 75) showed a shift towards improvement in swallowing (P < 0.001, mean = −174.4, CI −243.6, −105.3), and for those who died from pneumonia, there was no association between the SSQ derived swallowing score and death (P = 0.509, OR 0.10, CI −0.41, −0.20). We conclude that swallowing symptoms are a temporally dynamic process, which increases our knowledge on swallowing in the elderly

Views of people living with dementia and their carers on their present and future:a qualitative study

Background: Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. Methods: Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results: Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. Conclusion: Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions.</p