scholarly journals 502 - Diagnosis of dementia and post-diagnostic support – voice of people with dementia living in Poland

2021 ◽  
Vol 33 (S1) ◽  
pp. 56-56
Author(s):  
M. Maćkowiak ◽  
M Ciułkowicz ◽  
M. Duda-Sikuła ◽  
D. Szcześniak ◽  
J. Rymaszewska
Keyword(s):  
Positive Emotions ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Diagnostic Process ◽  
Care Providers ◽  
Dementia Diagnosis ◽  
Optimal Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Diagnostic Support

Background:The existing guidelines for the process of dementia diagnosis and treatment does not necessarily translate into optimal care and support for people with dementia. Such situation can have significant consequences. Misunderstanding of the new life situation as well as the negative perception of the diagnostic process itself are intensified by the limited options of post-diagnostic support. Especially in Poland, where the national dementia strategy has still not been implemented, experiences of people undergoing diagnosis and seeking support should be heard. By giving voice to people with dementia we can value their personal experiences, which due to the existing stigma, may often be overlooked and neglected.Objective:The aim of the study is to examine factors (conditions, barriers, facilitators) to receiving a dementia diagnosis and post-diagnostic support from the perspective of people with dementia living in Poland. The research was conducted as part of the JPND project COGNISANCE.Methods:Ten people with dementia diagnosed within last 24 months were interviewed with the use of selected projective techniques (word associations and third person expressive technique). An inductive qualitative content analysis approach has been implemented to analyse the obtained data.Results:Analysis revealed diverse categories encompassing broad spectrum of conditions, barriers and facilitators to receive a diagnosis and post-diagnostic support. People with dementia were prone to feeling positive emotions despite negative initial reactions during the diagnosis. Positive adaptation to the dementia were highly dependent on the empathetic attitude of the doctor and supportive family. Main needs were related to maintaining the independence, staying active, healthy and being socially connected. Interpersonal factors ensured sense of security and stability crucial for the well-being.Conclusions:Presented results provide important insight into the current experiences of people with dementia and represent guidelines for care providers and policy makers in introducing the optimal solutions in dementia support.

scholarly journals How Does Being Solo in Nature Affect Well-Being? Evidence from Norway, Germany and New Zealand

2021 ◽  
Vol 18 (15) ◽  
pp. 7897
Author(s):  
Evi Petersen ◽  
Annette Bischoff ◽  
Gunnar Liedtke ◽  
Andrew J. Martin
Keyword(s):  
New Zealand ◽  
Outdoor Education ◽  
Positive Emotions ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
National Sample ◽  
Gender And Age ◽  
Health Initiatives ◽  
Perception Of Time ◽  
Prior Experiences

Background: Solo—being intentionally solitary in nature—is receiving growing attention as a valuable outdoor education program component. Its practice and history have been researched in the context of experiential learning, but few studies have explicitly examined how solo experiences can affect dimensions of well-being. This study investigated a broad range of well-being pathways provided by being solo, based on data from Norway, Germany, and New Zealand. Methods: Using qualitative content analysis (QCA), the solo debrief responses of 40 participants (26 females, age: 19–64 years) were analysed, applying the PERMA-V framework (emotions, engagement, relationship, meaning, achievement, and vitality). Variations in the reports were explored as a function of the national sample, gender, age, prior solo experiences and expectations. Results: The study suggests that hedonic and eudemonic well-being pathways, represented by the six PERMA-V pillars, interrelate strongly. The experience of a range of positive emotions and connecting process during solo highlights two of the most frequent findings related to well-being pathways. The secondary findings suggest minor variations in the well-being pathways for the different national samples, gender and age. Expectations and prior experiences with solo were identified as context factors with minor impact. Further, the data-driven analysis identified specific physical activities, landscape features, sense-activation, perception of time and ‘good’ weather as relevant to the specific experience. Conclusions: Solo experiences provide for well-being-related pathways in a multitude of ways, which highlights the well-being potential of solo implementation across practical fields beyond outdoor education, such as wilderness therapy, and environmental and planetary health initiatives. Future studies should continue to explore solo’s well-being potential in different settings, especially in the context of non-Western samples.

scholarly journals How do doctors deliver a diagnosis of dementia in memory clinics?

2018 ◽  
Vol 212 (4) ◽  
pp. 239-245 ◽  
Author(s):  
Jemima Dooley ◽  
Nick Bass ◽  
Rose McCabe
Keyword(s):  
Conversation Analysis ◽  
Test Scores ◽  
Cognitive Test ◽  
Future Planning ◽  
Dementia Diagnosis ◽  
People With Dementia ◽  
The Future ◽  
Diagnosis Of Dementia ◽  
Memory Clinics ◽  
Recorded Diagnosis

BackgroundDementia diagnosis rates are increasing. Guidelines recommend that people with dementia should be told their diagnosis clearly and honestly to facilitate future planning.AimsTo analyse how doctors deliver a dementia diagnosis in practice.MethodConversation analysis was conducted on 81 video-recorded diagnosis feedback meetings with 20 doctors from nine UK memory clinics.ResultsAll doctors named dementia; 59% (n = 48) approached the diagnosis indirectly but delicately (‘this is dementia’) and 41% (n = 33) approached this directly but bluntly (‘you have Alzheimer's disease’). Direct approaches were used more often with people with lower cognitive test scores. Doctors emphasised that the dementia was mild and tended to downplay its progression, with some avoiding discussing prognosis altogether.ConclusionsDoctors are naming dementia to patients. Direct approaches reflect attempts to ensure clear diagnosis. Downplaying and avoiding prognosis demonstrates concerns about preserving hope but may compromise understanding about and planning for the future.Declaration of interestNone.

scholarly journals Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia

2020 ◽  
Vol 32 (5) ◽  
pp. 611-634 ◽  
Author(s):  
Michelle Parker ◽  
Sally Barlow ◽  
Juanita Hoe ◽  
Leanne Aitken
Keyword(s):  
Systematic Review ◽  
Help Seeking ◽  
Barriers And Facilitators ◽  
Qualitative Synthesis ◽  
Dementia Diagnosis ◽  
Network Support ◽  
Informal Network ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Protocol Registration

ABSTRACTObjective:To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design:A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used.Results:From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network.Conclusions:Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

scholarly journals 324 Effect of Regular Multidisciplinary Psychotropic Review Meetings on Anti-psychotic Prescribing Practices in a Community Nursing Unit

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Barbara Giles ◽  
Lesya Gamorak ◽  
Arlene Adanza ◽  
Joy Gicale ◽  
Frances McCarthy
Keyword(s):  
Community Nursing ◽  
Inclusion Criteria ◽  
Prescribing Practices ◽  
Dementia Diagnosis ◽  
Nursing Unit ◽  
People With Dementia ◽  
Appropriate Prescribing ◽  
High Prevalence ◽  
Diagnosis Of Dementia ◽  
Antipsychotic Prescribing

Abstract Background The management of non cognitive symptoms of dementia can be challenging for people living with dementia and their carers. The risks and limited benefit of antipsychotics in this setting is well documented however despite this they still are often prescribed. A previous study at our facility in 2016 highlighted a high prevalence of antipsychotic prescribing at 35% (Bambrick, et al. 2016). As a result of this, multidisciplinary psychotropic review meetings were established and are ongoing. Methods Two wards in our community nursing unit were selected. Inclusion criteria included residency > 6 months. The case notes, medication lists (admission and current prescriptions), and psychotropic review meeting notes were reviewed. Results 43 residents were included in the study. 72% (n=31) were female. The average age was 85 years. 74% (n= 32) of residents had a documented dementia diagnosis. On admission, 7 residents were taking regular antipsychotics. 5 of these medications were subsequently either reduced or discontinued. At the time of the study, 16% (n=7) were prescribed regular antipsychotics. There was a definite indication for 3 of these (schizoaffective disorder, psychosis, paranoid depression). 1 resident had a traumatic brain injury with associated distressing symptoms with harm incidents. 3 had a dementia diagnosis with associated distressing symptoms. A further 14% (n= 6) were prescribed antipsychotics on a PRN basis. 5 had a documented diagnosis of dementia with associated distressing symptoms. None of these residents received these medications in the 4 weeks prior to the study. Conclusion Significant improvements are noted since 2016 with the overall prevalence of antipsychotic prescribing decreasing from 35% to 16%, with the majority of these prescriptions having a clear indication. It is reassuring that residents are not receiving prn medications frequently. We await the national clinical guidance on “Appropriate Prescribing of Psychotropic Medication in People with Dementia” to further guide our practice.

scholarly journals Self-worth and bonding emotions are related to well-being in health-care providers: a cross-sectional study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sonja Weilenmann ◽  
Ulrich Schnyder ◽  
Nina Keller ◽  
Claudio Corda ◽  
Tobias R. Spiller ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Positive Emotions ◽  
Sense Of Self ◽  
Negative Emotions ◽  
Basic Needs ◽  
Well Being ◽  
The Self ◽  
Care Providers ◽  
Self Worth

Abstract Background Interacting with patients can elicit a myriad of emotions in health-care providers. This may result in satisfaction or put providers at risk for stress-related conditions such as burnout. The present study attempted to identify emotions that promote provider well-being. Following eudaimonic models of well-being, we tested whether certain types of emotions that reflect fulfilment of basic needs (self-worth, bonding with patients) rather than positive emotions in general (as suggested by hedonic models) are linked to well-being. Specifically, we hypothesized that well-being is associated with positive emotions directed at the self, which reflect self-worth, and positive as well as negative emotions (e.g., worry) directed at the patient, which reflect bonding. However, we expected positive emotions directed at an object/situation (e.g., curiosity for a treatment) to be unrelated to well-being, because they do not reflect fulfilment of basic needs. Methods Fifty eight physicians, nurses, and psychotherapists participated in the study. First, in qualitative interviews, they reported their emotions directed at the self, the patient, or an object/situation during distressing interactions with patients. These emotions were categorised into positive emotions directed towards the self, the patient, and an object/situation, and negative emotions directed towards the patient that reflect bonding. Second, providers completed questionnaires to assess their hedonic and eudaimonic well-being. The well-being scores of providers who did and did not experience these emotions were compared. Results Providers who experienced positive emotions directed towards the self or the patient had higher well-being than those who did not. Moreover, for the first time, we found evidence for higher well-being in providers reporting negative patient-directed emotions during distressing interactions. There was no difference between providers who did and did not experience positive object/situation-directed emotions. Conclusions These findings may point towards the importance of “eudaimonic” emotions rather than just positive emotions in interactions with patients. Emotions such as contentment with oneself, joy for the patient’s improvement, and, notably, grief or worry for the patient may build a sense of self-worth and strengthen bonding with the patient. This may explain their association with provider well-being.

The impact of driving cessation for people with dementia – An integrative review

Dementia ◽  
2020 ◽  
pp. 147130122091986
Author(s):  
Alison Holden ◽  
Helen Pusey
Keyword(s):  
Transition Period ◽  
Well Being ◽  
Integrative Review ◽  
Life Transition ◽  
Psychological Consequences ◽  
Driving Cessation ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Significant Life ◽  
The Impact

At the point of diagnosis of dementia many people will be driving and go on to experience the significant life transition from driver to non-driver. Driving plays an important role in society enhancing independence, quality of life and general health and well-being. Hence cessation from driving can be a very difficult life transition to make. The aim of this integrative review was to summarise what is known about the impact and experience for people with dementia and their carers in the ‘post-cessation’ phase of retiring from driving. Thematic analysis utilised themes identified in previous life transition research focusing on driving cessation and these included processes, influences, emotions, roles and programmes. Analysis revealed a lack of formal processes to follow in surrendering one’s licence and that the medical professions and multi-disciplinary teams should take more responsibility for the legal processes of driving cessation and supporting individuals at the point of and following this disclosure. People with dementia and their carers experience a significant impact upon their life roles and considerable emotional and psychological consequences. The review also suggested that there are a variety of influences affecting the life transition period from driver to non-driver such as family support and access to alternative forms of transport and that there is a need for development for interventions/programmes to support individuals with dementia post-driving cessation.

An analysis of carer burden among family carers of people with and without dementia in Ireland

2020 ◽  
pp. 1-12
Author(s):  
Áine Teahan ◽  
Attracta Lafferty ◽  
John Cullinan ◽  
Gerard Fealy ◽  
Eamon O’Shea
Keyword(s):  
Older People ◽  
Well Being ◽  
Self Report ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Dementia Diagnosis ◽  
Carer Burden ◽  
People With Dementia ◽  
Original Dataset

ABSTRACT Objective: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Design: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. Setting: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. Participants: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Measurements: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. Results: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Conclusion: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

scholarly journals Reasons for and Scenarios Associated With Failure to Cease Smoking: Results From a Qualitative Study Among Smokers Who Had Unsuccessfully Attempted to Quit

2020 ◽  
Author(s):  
Krzysztof Buczkowski ◽  
Magdalena Dachtera-Frackiewicz ◽  
Dorota Luszkiewicz ◽  
Katarzyna Klucz ◽  
Jolanta Sawicka-Powierza ◽  
...  
Keyword(s):  
Smoking Cessation ◽  
Positive Emotions ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Structured Interviews ◽  
Smoking Relapse ◽  
Quit Smoking ◽  
Social Events ◽  
Frequent Relapse

Abstract Background: Most smokers attempt to quit smoking, but few are successful. Data regarding the reasons for this relapse and the course of the relapse process may be helpful for determining efficient methods of smoking cessation. This study aimed to identify the causes of and scenarios associated with smoking relapse after effective smoking cessation. Methods: We conducted 20 semi-structured interviews with smokers who had previously unsuccessfully attempted to quit. The data underwent qualitative content analysis. Results: Three major themes were identified: Reasons for smoking relapse; Smoking relapse scenarios; and Perception of the influence of personal environments, including family and physicians, on refraining from smoking after cessation. The first theme comprised the following subthemes: insufficient willpower and self-discipline, contact with smokers, exposure to stressful situations, lack of family support, weight gain, and insufficient improvement in one’s mental and physical well-being. The second theme contained enjoyable social events, professional life, critical events, and encouragement to smoke from family members. The respondents frequently emphasized the large role of interaction with other smokers. Conclusions: The predominant factors underlying smoking relapse include insufficient willpower and self-discipline and exposure to stress. The most frequent relapse scenario concerned experiencing negative or positive emotions when interacting with other smokers.

scholarly journals Empowered by Intertwined Theory and Practice – Experiences From a Diabetes Sports Camp for Physically Active Adults With Type 1 Diabetes

2021 ◽  
Vol 2 ◽  
Author(s):  
Stig Mattsson ◽  
Peter Adolfsson ◽  
Johan Jendle ◽  
Viktor Bengtsson ◽  
Carina Sparud-Lundin
Keyword(s):  
Type 1 Diabetes ◽  
Health Care Providers ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Theory And Practice ◽  
Care Providers ◽  
Physically Active ◽  
Telephone Interviews ◽  
Health Related

AimsTo describe the experiences of individuals with diabetes type 1 (T1D) participating in diabetes sports camps and how acquired knowledge could be used in daily self-management.MethodsSemi-structured telephone interviews were conducted with 15 adults with T1D. A strategic sample procedure was chosen. The interviews were analyzed using qualitative content analysis.ResultsThe overarching theme ”Empowered by intertwined theory and practice”, included three main categories: Learning in a motivation-enhancing environment, incorporation of new habits and perceptions of glycemic control and health-related outcomes. The participants considered the camp to be an excellent opportunity to share feelings, ideas, and knowledge. They felt empowered by the camp atmosphere as well as supportive environment. After the camp, the general well-being was improved by incorporating new habits and improvements in glucose control. ConclusionsA diabetes sports camp constitutes an excellent, but resource-intensive, complimentary support in diabetes care and provides opportunities for T1D individuals to become more independent and autonomous. The findings indicate the need for more directed learning activities for individuals with type 1 diabetes and health care providers to increase their competence in the area of T1D and exercise in order to adequately manage counseling in various types of sports.

scholarly journals The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Anne Marie Mork Rokstad ◽  
Janne Røsvik ◽  
Marit Fossberg ◽  
Siren Eriksen
Keyword(s):  
Qualitative Content Analysis ◽  
Psychosocial Interventions ◽  
Well Being ◽  
Total Sample ◽  
Vulnerable Groups ◽  
Telephone Interviews ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
Restrictive Measures ◽  
Health And Well Being

Abstract Background Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

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