scholarly journals What influences uptake of psychosocial interventions by people living with early dementia? A qualitative study

Dementia ◽  
2021 ◽  
pp. 147130122110073
Author(s):  
Becky Field ◽  
Elizabeth Coates ◽  
Gail Mountain
Keyword(s):  
Social Contact ◽  
Psychosocial Interventions ◽  
Group Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Community Activities ◽  
People With Dementia ◽  
Practical Support ◽  
Early Dementia ◽  
Mental Stimulation

Background Health policy promotes post-diagnostic support for people affected by dementia. Evidence suggests psychosocial interventions can effectively support people living with dementia after diagnosis. Yet, what influences uptake of psychosocial interventions by people with early dementia is poorly understood. This research aimed to identify influences on uptake of psychosocial interventions by people with early dementia. Methods Sixteen face-to-face semi-structured interviews with people with early dementia, either alone or with a family member(s), were completed. Twelve staff participated in semi-structured interviews or a focus group. Thematic analysis and triangulation enabled identification of overall themes across different participant groups and interview types. Main Findings Four overarching themes influencing uptake were identified: (1) adjusting to a diagnosis, (2) appeal of activities and perception of benefit, (3) service and societal context, and (4) relationships and communication. Individual responses to diagnosis, experiences of dementia and dementia services influenced uptake. Group interventions were discussed the most by all participants. Group interventions offering social contact, peer support, information, enjoyable activities and mental stimulation were valued. However, group interventions specifically aimed at people with dementia did not appeal to all. Ability to travel and convenience of locations were important. Continuing with community activities not focused on dementia was valued. Stigma around dementia appeared to discourage uptake. Emotional and practical support from family was key to facilitating uptake as were the relationships between people with dementia and staff. Conclusion A complex interplay of individual, service and societal influences affect uptake of psychosocial interventions by people with early dementia. How interventions and which services can enable people with early dementia remain engaged in their everyday lives needs consideration. Further research examining uptake of specific interventions commonly offered to people living with early dementia is needed. Involving people with early dementia in designing interventions aiming to support them is paramount.

scholarly journals The perceived and observed needs of patients with dementia admitted to acute medical wards

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1997-2017 ◽  
Author(s):  
Anthony Scerri ◽  
Charles Scerri ◽  
Anthea Innes
Keyword(s):  
Unmet Needs ◽  
Social Contact ◽  
Hospital Staff ◽  
Routine Care ◽  
Structured Interviews ◽  
Care Needs ◽  
People With Dementia ◽  
Acute Hospitals ◽  
Medical Wards ◽  
Constant Observation

It is acknowledged that the needs of persons living with dementia admitted in acute hospitals are not always met. Previous studies have focused on the perceived needs of professional caregivers or family members whilst the voices of patients with dementia in acute hospitals have not been extensively reported. This may have contributed to the under-recognition of the needs of persons living with dementia. The aim of this study was to categorise the perceived and observed needs of persons with dementia admitted in acute medical wards and to explore whether these needs are being or have been met. Thirteen people with dementia in three medical wards, who could verbally communicate with the researcher, were purposively selected as research participants. Semi-structured interviews were conducted to elicit each participant’s experiences of their hospital stay and whether their needs were perceived to have been/are being met. Moreover, routine care with the same participants was observed using Dementia Care Mapping. Maslow’s Hierarchy of Needs was used as a framework to categorise care needs. Our findings demonstrate that basic needs such as toileting, feeding, drinking, continence and comfort were not always met. Moreover, the largest gap between met and unmet needs was found in patients who were either under constant observation or unable to communicate. Too much emphasis was perceived and observed to be given on what staff considered as safety needs at the expense of other needs. The patients’ need for social contact and self-esteem such as dignity and respect were often ignored and this led to patients feeling devalued. Hospital staff have to be more aware of the holistic needs of patients with dementia in acute settings and the way care is delivered in order to make up for these unmet needs, thus facilitating person-centred care.

scholarly journals e-Learning and Web-Based Tools for Psychosocial Interventions Addressing Neuropsychiatric Symptoms of Dementia During the COVID-19 Pandemic in Tokyo, Japan: Quasi-Experimental Study (Preprint)

2021 ◽  
Author(s):  
Miharu Nakanishi ◽  
Syudo Yamasaki ◽  
Kaori Endo ◽  
Junko Niimura ◽  
Canan Ziylan ◽  
...  
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Psychosocial Interventions ◽  
Control Group ◽  
Web Based ◽  
Face To Face ◽  
Training Course ◽  
People With Dementia ◽  
Quasi Experimental ◽  
E Learning

BACKGROUND Concern has been raised that the COVID-19 pandemic and consequent social distancing measures may increase neuropsychiatric symptoms in people with dementia. Thus, we developed and delivered an e-learning training course to professional caregivers on using a web-based tool for psychosocial interventions for people with dementia. OBJECTIVE The aim of our study was to evaluate the feasibility and efficacy of an e-learning course in combination with a web-based tool in addressing neuropsychiatric symptoms of dementia. METHODS A quasi-experimental design was used in Tokyo, Japan. The e-learning course was delivered three times to professional caregivers between July and December 2020. Caregivers who completed the course assessed the level of neuropsychiatric symptoms in people with dementia using the total score from the Neuropsychiatric Inventory (NPI) via a web-based tool. The primary outcome measures were the number of caregivers who implemented follow-up NPI evaluations by March 2021 and the change in NPI scores from baseline to their most recent follow-up evaluations. As a control group, information was also obtained from professional caregivers who completed a face-to-face training course using the same web-based tool between July 2019 and March 2020. RESULTS A total of 268 caregivers completed the e-learning course in 2020. Of the 268 caregivers, 56 (20.9%) underwent follow-up evaluations with 63 persons with dementia. The average NPI score was significantly reduced from baseline (mean 20.4, SD 16.2) to the most recent follow-up evaluations (mean 14.3, SD 13.4). The effect size was assumed to be medium (Cohen <i>d</i><sub>rm [repeated measures]</sub>=0.40). The control group consisted of 252 caregivers who completed a face-to-face training course. Of the 252 caregivers, 114 (45.2%) underwent follow-up evaluations. Compared to the control group, caregivers who completed the e-learning course were significantly less likely to implement follow-up evaluations (<i>χ</i><sup>2</sup><sub>1</sub>=52.0, <i>P</i>&lt;.001). The change in NPI scores did not differ according to the type of training course (baseline-adjusted difference=–0.61, <i>P</i>=.69). CONCLUSIONS The replacement of face-to-face training with e-learning may have provided professionals with an opportunity to participate in the dementia behavior analysis and support enhancement (DEMBASE) program who may not have participated in the program otherwise. Although the program showed equal efficacy in terms of the two training courses, the feasibility was suboptimal with lower implementation levels for those receiving e-learning training. Thus, further strategies should be developed to improve feasibility by providing motivational triggers for implementation and technical support for care professionals. Using online communities in the program should also be investigated.

scholarly journals Psychosocial Interventions for People With Dementia and Their Caregivers in Primary Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 812-812
Author(s):  
Lou Frankenstein ◽  
Georg Jahn
Keyword(s):  
Primary Care ◽  
Occupational Therapy ◽  
General Practitioners ◽  
Behavioral Treatment ◽  
Online Survey ◽  
Behavioral Therapy ◽  
Psychosocial Interventions ◽  
Structured Interviews ◽  
Optimal Care ◽  
People With Dementia

Abstract Psychosocial interventions, such as occupational and behavioral therapy are effective opportunities to support people with dementia and their caregivers in adapting to the cognitive and behavioral changes and the resulting challenges in everyday life they are facing. However, psychosocial interventions do not seem to have found their way into routine care yet. We wanted to get an insight into the knowledge and attitudes general practitioners have about occupational and behavioral therapy. In an online survey we asked medical students about the relevance of dementia, occupational therapy, and behavioral therapy during their studies. In another online survey we asked practitioners what they had learned about these topics and to what extent they are making use of psychosocial interventions. Then semi-structured interviews were carried out with general practitioners all over Germany, exploring their experiences with dementia and psychosocial interventions in primary care as well as their expectations regarding interdisciplinary cooperation. It became obvious that psychosocial interventions are not conveyed sufficiently within medical school. A lack of occupational therapy prescriptions for people with dementia seemed to result from uncertainties regarding the content of the approach and the budgeting of the prescriptions. Barriers for prescriptions of behavioral treatment were a lack of therapy places and the perceived inadequacy of the approach for this target group. General retentions to invest in people with dementia were expressed. These obstacles need to be overcome in order to provide optimal care for people with dementia and their family caregivers.

scholarly journals A mixed-methods study describing behavioral factors that influenced general practitioners’ experiences using triage during the COVID-19 pandemic

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Shaun Lackey ◽  
Kelly Ann Schmidtke ◽  
Ivo Vlaev
Keyword(s):  
General Practitioners ◽  
Online Survey ◽  
Service Providers ◽  
Qualitative Interviews ◽  
Theoretical Domains Framework ◽  
Practical Training ◽  
Behavioral Factors ◽  
Structured Interviews ◽  
Face To Face ◽  
Practical Support

Abstract Background Early in the COVID-19 pandemic, general practices were asked to expand triage and to reduce unnecessary face-to-face contact by prioritizing other consultation modes, e.g., online messaging, video, or telephone. The current study explores the potential barriers and facilitators general practitioners experienced to expanding triage systems and their attitudes towards triage during the COVID-19 pandemic. Method A mixed-method study design was used in which a quantitative online survey was conducted along with qualitative interviews to gain a more nuanced appreciation for practitioners’ experiences in the United Kingdom. The survey items were informed by the Theoretical Domains Framework so they would capture 14 behavioral factors that may influence whether practitioners use triage systems. Items were responded to using seven-point Likert scales. A median score was calculated for each item. The responses of participants identifying as part-owners and non-owners (i.e., “partner” vs. “non-partner” practitioners) were compared. The semi-structured interviews were conducted remotely and examined using Braun and Clark’s thematic analysis. Results The survey was completed by 204 participants (66% Female). Most participants (83%) reported triaging patients. The items with the highest median scores captured the ‘Knowledge,’ ‘Skills,’ ‘Social/Professional role and identity,’ and ‘Beliefs about capabilities’ domains. The items with the lowest median scores captured the ‘Beliefs about consequences,’ ‘Goals,’ and ‘Emotions’ domains. For 14 of the 17 items, partner scores were higher than non-partner scores. All the qualitative interview participants relied on a phone triage system. Six broad themes were discovered: patient accessibility, confusions around what triage is, uncertainty and risk, relationships between service providers, job satisfaction, and the potential for total digital triage. Suggestions arose to optimize triage, such as ensuring there is sufficient time to conduct triage accurately and providing practical training to use triage efficiently. Conclusions Many general practitioners are engaging with expanded triage systems, though more support is needed to achieve total triage across practices. Non-partner practitioners likely require more support to use the triage systems that practices take up. Additionally, practical support should be made available to help all practitioners manage the new risks and uncertainties they are likely to experience during non-face-to-face consultations.

scholarly journals Theatre production: a positive metaphor for dementia care-giving

2021 ◽  
pp. 1-16
Author(s):  
Christine Brown Wilson ◽  
Jan Hinson ◽  
Jacinda L. Wilson ◽  
Stephanie Power ◽  
Daniel Hinson ◽  
...  
Keyword(s):  
Central Character ◽  
Family Carers ◽  
Structured Interviews ◽  
Face To Face ◽  
Care Giving ◽  
People With Dementia ◽  
Theatre Production ◽  
Fresh Perspective ◽  
The Individual ◽  
Person With Dementia

Abstract Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

How do activating interventions fit the personal needs, characteristics and preferences of people with dementia living in the community and their informal caregivers?

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 157-177 ◽  
Author(s):  
Netta Van’t Leven ◽  
Jacomine de Lange ◽  
Anna-Eva Prick ◽  
Anne Margriet Pot
Keyword(s):  
Occupational Therapy ◽  
Daily Life ◽  
Early Stage ◽  
Comparative Method ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Structured Interviews ◽  
Support Intervention ◽  
People With Dementia ◽  
Pleasant Events

Psychosocial interventions aim to mitigate the serious consequences of dementia for the daily life of people with dementia and their informal caregivers. To deliver a person-centred approach, it is crucial to take needs, characteristics and preferences of people with dementia and their informal caregivers into account. However, these factors are generally not systematically checked in order to determine which intervention will be most appropriate. Additionally, little is known about which intervention suits which needs, characteristics and preferences. Therefore, this study examined how three multiple-component, activating dyadic interventions fitted needs, characteristics, and preferences of both the people with dementia and their informal caregivers: the Pleasant Events Program, the Exercise and Support Intervention for People with Dementia and Their Caregivers, and Occupational Therapy. Semi-structured interviews were held with participants in either one of the interventions, 34 dyads and 19 professionals. The constant comparative method was used for the analysis. Five factors influenced the dyad’s ‘fit’: timing, need for activity, lifestyle, apart-or-together and meaning of (lost) activity. The factors ‘timing’ and a ‘need for activity’ were conditional for these activating interventions. Dyads in an early stage of dementia, who were aware of the effects on daily life, were open to a change in routine, and had a need to maintain activities profited from these interventions. Three distinctive factors were important for the fit of one of the three interventions in particular: ‘lifestyle’, ‘apart or together’ and ‘meaning of (lost) activity’. The Pleasant Events Programme and the Exercise and Support intervention properly addressed the need for activities that afforded daily pastimes or structure. The Exercise and Support Intervention addressed the need for physical activity and emphasized shared activity. Occupational Therapy properly addressed the need for self-sufficiency, maintaining activities and adjustment to physical limitations. These factors can contribute to a more person-centred application of the interventions.

scholarly journals CARING FOR OLDER INDIGENOUS PEOPLE WITH DEMENTIA: ATTENDING TO THE PERSONALITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S433-S433
Author(s):  
Kathleen R Mason ◽  
Tess H Moeke-Maxwell ◽  
Merryn Gott
Keyword(s):  
Indigenous People ◽  
Family Members ◽  
Holistic Approach ◽  
Spiritual Needs ◽  
Care Needs ◽  
Face To Face ◽  
Community Activities ◽  
People With Dementia ◽  
The Individual ◽  
Person With Dementia

Abstract Māori, the indigenous people of New Zealand, are living longer and dying older. The prevalence of conditions associated with older people, such as Dementia are expected to increase amongst the Māori population. Pae Herenga, a qualitative research project investigating traditional Māori end-of-life care customs, identified an indigenous narrative of Dementia care, as carried out by their families. Sixty participants took part in face-to-face interviews to systematically record the traditional care customs employed by Māori families. Of these families, five experienced caring for someone with dementia. A traditional Māori family values approach based on biological connections, relationships, empathy, love, patience and inclusiveness aimed to care for the individual with Dementia as an important member of the family, and sought to maintain as much of the person’s autonomy as possible, for as long as possible. Sharing care roles between family members and maintaining connections to Māori communities helped to prevent isolation of the person with Dementia and their family members caring for them. Involvement in family and community activities, and attending to the individual’s personality and their spiritual needs were just as important as tending to their physical care needs. These findings emphasize the importance of a holistic approach to caring for indigenous people with Dementia.

scholarly journals How meeting centres continue to support people affected by dementia: report on UK COVID-19 impact

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Shirley Evans ◽  
Jennifer Bray ◽  
Dawn Brooker
Keyword(s):  
Social Adjustment ◽  
Social Engagement ◽  
Well Being ◽  
Structured Interviews ◽  
Content Type ◽  
Face To Face ◽  
People With Dementia ◽  
Coping Model ◽  
The Uk ◽  
And Coping

Purpose Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional and social adjustment. Design/methodology/approach Semi-structured interviews and focus groups were conducted with people affected by dementia, staff, volunteers, managers and trustees from MCs. Data were collected on the type and quantity of contact MCs had with people affected by dementia during lockdown. Data were coded and mapped against adaptation and coping strategies, i.e. practical understanding and empowerment, optimising emotional well-being and opportunities for social engagement. Findings A range of remote approaches, both technological (e.g. using online platforms) and non-technological (e.g. newsletters and post) were implemented alongside limited face-to-face contact. Regular MC activities were adapted using the different approaches. It was possible to map all the adaptation and coping model support strategies to the activities delivered in this way. MCs were able to adapt rapidly to continue to support people to adjust to change. Social implications Moving forward, combining approaches (usual MC and remote) means person-centred support could be optimized, addressing social isolation and reaching those who cannot attend MCs. Originality/value This paper offers new insight into the extent to which community-based support for people with dementia can continue when face-to-face contact is not possible because of COVID-19.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p &lt; .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p &lt; .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

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