scholarly journals The challenge of pain identification, assessment, and management in people with dementia: a qualitative study

BJGP Open ◽  
2020 ◽  
Vol 4 (2) ◽  
pp. bjgpopen20X101040
Author(s):  
Laurna Bullock ◽  
Carolyn A Chew-Graham ◽  
John Bedson ◽  
Bernadette Bartlam ◽  
Paul Campbell
Keyword(s):  
Pain Management ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Old Age ◽  
Community Services ◽  
Community Dwelling ◽  
Assessment Tools ◽  
Structured Interviews ◽  
People With Dementia ◽  
Management Plans

BackgroundPainful conditions are common in older adults, including people with dementia. The symptoms associated with dementia (for example, diminished language capacity, memory impairment, and behavioural changes), however, may lead to the suboptimal identification, assessment, and management of pain. Research has yet to qualitatively explore pain management for community-dwelling people with dementia.AimTo explore pain identification, assessment, and management for community-dwelling people with dementia.Design & settingA qualitative study was undertaken, set in England.MethodSemi-structured interviews took place with people with dementia, family caregivers, GPs, and old-age psychiatrists. Data were analysed thematically.ResultsInterviews were conducted with eight people with dementia, nine family caregivers, nine GPs, and five old-age psychiatrists. Three themes were identified that related to pain identification and assessment: gathering information to identify pain; the importance of knowing the person; and the use of pain assessment tools. A further three themes were identified that related to pain management: non-drug strategies; concerns related to analgesic medications; and responsibility of the caregiver to manage pain.ConclusionIdentifying and assessing the pain experienced by people with dementia was challenging. Most people with dementia, family caregivers, and healthcare professionals supported non-drug strategies to manage pain. The minimal concerns associated with non-drug strategies contrasted the multifactorial concerns associated with analgesic treatment for people with dementia. Given the complexity of pain identification, assessment, and management, primary care should work together with family caregivers and community services, with case finding for pain being considered in all assessment and management plans.

Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

2019 ◽  
Vol 32 (2) ◽  
pp. 255-265
Author(s):  
Mayumi Nishimura ◽  
Ayako Kohno ◽  
Jenny T. van der Steen ◽  
Toru Naganuma ◽  
Takeo Nakayama
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
Life Experience ◽  
Central Position ◽  
Structured Interviews ◽  
Cultural Backgrounds ◽  
Term Care ◽  
Family Structures ◽  
People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

scholarly journals Technology-Driven Dyadic Interaction Support for Community-Dwelling People With Dementia and Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-589
Author(s):  
Karin Wolf-Ostermann ◽  
Lars Steinert ◽  
Tanja Shultz ◽  
Viktoria Hoel
Keyword(s):  
Family Caregivers ◽  
Cognitive Abilities ◽  
Community Dwelling ◽  
Dyadic Interaction ◽  
Structured Interviews ◽  
Joint Activities ◽  
People With Dementia ◽  
Intervention Community ◽  
The Impact

Abstract People with dementia and their family caregivers struggling with the impacts of the condition on cognitive abilities, experience deterred social interactions and strained relationships. Technology can potentially sustain the relationship by engaging dyads in joint activities and supporting their interaction. This study aimed to evaluate the impact of a tablet-based activation system, I-CARE, specifically designed to engage people with dementia in meaningful activities. In this intervention, community-dwelling people with dementia and their family caregiver engaged in joint activities supported by the I-CARE system. Quantitative measures on quality of life, relationship quality and caregiver burden are collected, while semi-structured interviews explore the impact of Covid-19, as well as what motivates the participants to invite technology into their dyadic interactions. Our findings provide important insight in how technology can support social health and relationship sustenance of dyads living with dementia, and what implications Covid-19 has for their social participation in society.

scholarly journals How Do Family Caregivers’ Values Influence Pain Management for Older Adults with Dementia?

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 949-949
Author(s):  
Hui Zhao ◽  
Pamela Kulbok ◽  
Ishan Williams ◽  
Carol Manning ◽  
Rafael Romo
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Pain Management ◽  
Family Caregivers ◽  
Personal Values ◽  
Alternative Therapy ◽  
Community Dwelling ◽  
Structured Interviews ◽  
Dementia Patients

Abstract Professional caregivers rely on formal training when managing pain among patients with dementia, but family caregivers (FCGs) lack this foundation. Instead, FCGs use informal sources that may reflect a values-driven decision-making process. Few studies have examined how FGCs’ personal values impact pain management for dementia patients. We sought to examine the influence of personal values on pain management among FCGs for community-dwelling older adults with dementia using qualitative descriptive methods. Twenty-five adult FCGs, aged from 29 to 95, were recruited in central Virginia. Participants were predominantly white, married, female, and high school graduates. We conducted semi-structured interviews that were audio recorded and analyzed using constant comparative analysis. Four themes emerged: 1) Priority for pain management: when quality of life is valued over other factors (i.e., length of life), priorities focused on no pain, leading to better pain management; 2) Moral perspectives: negative views toward drugs, especially opioids, led to less use and greater report of pain; 3) Beliefs about alternative therapy: negative views led to less likely use of non-traditional approaches and reports of more pain, and 4) Personal experience of pain: past personal experiences of pain (negative or positive) influenced the priority placed on pain management and the FCG’s ability to provide effective pain management. The diverse views held by FCGs demonstrate a value-based process and suggest a modifiable factor in pain management. Helping FCGs reflect biases while reinforcing values that improve pain management would lead to improve pain and quality of life for older adults with dementia.

scholarly journals Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 154-155
Author(s):  
Melissa Harris ◽  
Marita Titler
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Community Services ◽  
Community Dwelling ◽  
Care Recipient ◽  
Future Research ◽  
Service Access ◽  
Psychological Responses ◽  
People With Dementia ◽  
The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

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 < .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 < .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.

scholarly journals Nursing-Related Barriers to Children’s Pain Management at Selected Hospitals in Ghana: A Descriptive Qualitative Study

2020 ◽  
Vol 2020 ◽  
pp. 1-7 ◽  
Author(s):  
Abigail Kusi Amponsah ◽  
Evans Frimpong Kyei ◽  
John Bright Agyemang ◽  
Hanson Boakye ◽  
Joana Kyei-Dompim ◽  
...  
Keyword(s):  
Pain Management ◽  
Qualitative Study ◽  
Developed Countries ◽  
Assessment Tools ◽  
Pediatric Care ◽  
Material Resources ◽  
Management Interventions ◽  
Communication Difficulties ◽  
Children's Pain ◽  
Descriptive Qualitative

Staff shortages, deficient knowledge, inappropriate attitudes, demanding workloads, analgesic shortages, and low prioritization of pain management have been identified in earlier studies as the nursing-related barriers to optimal children’s pain management. These studies have mainly been undertaken in developed countries, which have different healthcare dynamics than those in developing countries. The current study, therefore, sought to identify and understand the nursing-related barriers to children’s pain management in the Ghanaian context. A descriptive qualitative study was conducted among 28 purposively sampled nurses working in the pediatric units of five hospitals in the Ashanti region of Ghana. Over the course of three months, participants were interviewed on the barriers which prevented them from optimally managing children’s pain in practice. Recorded interviews were transcribed verbatim and deductively analysed based on a conceptual interest in pain assessment and management-related barriers. NVivo 12 plus software guided data management and analyses. The mean age of participating nurses was 30 years, with majority being females (n = 24). Participants had worked in the nursing profession for an average of five years and in the pediatric care settings for an average of two years. The nursing-related barriers identified in the present study included communication difficulties in assessing and evaluating pain management interventions with children who have nonfunctional speech, insufficient training, misconceptions on the experience of pain in children, lack of assessment tools, and insufficient number of nurses to manage the workload and nurses’ inability to prescribe analgesics. The present study revealed some barriers which prevented Ghanaian nurses from optimally managing children’s pain. Nurses should be educated, empowered, and supported with the requisite material resources to effectively manage children’s pain and improve outcomes for families, healthcare systems, and the nation. Future studies should explore the facilitators and barriers from other stakeholders involved in pediatric pain management.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Experience of family caregivers of community-dwelling stroke survivors and risk of elder abuse: a qualitative study

2014 ◽  
Vol 16 (5) ◽  
pp. 276-293 ◽  
Author(s):  
Celia Chow ◽  
Agnes Tiwari
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Local Community ◽  
Service Providers ◽  
Elder Abuse ◽  
Community Dwelling ◽  
Stroke Survivors ◽  
Content Type ◽  
The Disabled ◽  
Personal Resilience

Purpose – The purpose of this paper is to explore the following questions. First, what are the experiences of family caregivers in caring for community-dwelling stroke survivors? Second, what services help or do not help the caregivers in managing their caregiving role? Design/methodology/approach – A qualitative study was conducted with a total of six focus group interviews with 29 stroke caregivers selected using convenience sampling in a local community centre. All interviews were recorded and transcribed for content analysis. Findings – The results pointed to three main themes working together to facilitate desirable outcomes in caregiving and prevent elder abuse: factors contributing to caregiver stress and factors that have a buffering effect on caregiver stress and unmet needs identified from caregivers’ experiences. Research limitations/implications – The authors found that there were a number of factors contributing to caregiver stress. The findings matched with the concept that caregiver stress should not be considered as the primary cause of elder abuse. Findings provided information for further research to investigate positive coping and adjustment for stroke survivors, caregivers and their families. Practical implications – Policy makers and service providers may consider specific policies and tailor-made services to enhance the effectiveness of current practice. The themes emerging from the study could be further reviewed in a longitudinal way to explore the cost-effectiveness, the outcomes and trajectory of interventional programmes. Social implications – Education would be essential to let the public understand caregivers’ difficulties and needs. Prevention of elder abuse may be approached with a range of risk factors for both perpetrating and being elder abuse victim. Originality/value – From the findings of the study, the authors found that there were service gaps within policy and interventions. Concrete suggestions for improving the public's attitude and public facilities/transport for the disabled were captured in the study. In addition to personal resilience, caregivers had a strong wish for a supportive environment and services that would facilitate a better caregiving outcome.

Needs and views on healthy lifestyles for the prevention of dementia through mobile health (mHealth) interventions in China: a qualitative study. (Preprint)

2021 ◽  
Author(s):  
Jinxia Zhang ◽  
Esmé Eggink ◽  
Xiaoyu Zhang ◽  
Xingming Li ◽  
Bin Jiang ◽  
...  
Keyword(s):  
Risk Factors ◽  
Older Adults ◽  
Qualitative Study ◽  
Mobile Health ◽  
Healthy Lifestyle ◽  
Healthy Lifestyles ◽  
Structured Interviews ◽  
Living Situation ◽  
Chinese Older Adults ◽  
People With Dementia

BACKGROUND China is expected to face among the largest increase of people with dementia worldwide in the coming decades, seriously challenging the Chinese healthcare system. Approximately 40% of all dementia cases might be attributable to potentially modifiable risk factors, suggesting the potential to delay or prevent dementia when targeting these risk factors. Mobile health (mHealth) may improve the accessibility of such dementia prevention strategies in China, given the wide and increasing use of smartphones by the entire Chinese population, including older adults. OBJECTIVE The aim of this qualitative study is to explore the needs and views of Chinese older adults regarding healthy lifestyles to prevent cardiovascular disease (CVD) and dementia through mHealth, facilitating development and cultural adaptation of a coach-supported mHealth platform for the Prevention of Dementia using Mobile Phone Applications (PRODEMOS) study. METHODS We performed semi-structured interviews with older adults, aged 55 and over, from Beijing and Tai’an, China, with an increased dementia risk without a diagnosis of dementia, who possess a smartphone. Participants were recruited through seven hospitals that participate in the PRODEMOS study, and were purposively sampled on age, sex, living situation, and history of CVD and diabetes. Data were analysed using thematic analysis. RESULTS Between February and December 2019 we performed 26 interviews with participants aged 55-86 years. Three main themes were identified: valuing a healthy lifestyle, sociocultural expectations, and need for guidance. First, following a healthy lifestyle was generally deemed important. In addition to generic healthy behaviours, participants regarded certain specific Chinese behaviours as important to prevent disease. Second, the sociocultural context played a crucial role, as an important motive to avoid disease was to limit the burden put on family members. However, time-consuming family and other social obligations could also impede healthy behaviours, such as regular physical activity and a healthy diet. Finally, there seemed to be a need for reliable and personalised lifestyle advice and for guidance from a health professional. CONCLUSIONS In spite of their clear appreciation of healthy lifestyles, Chinese older adults express a need for personalised lifestyle support in order to adopt healthy behaviours. Potentially, the PRODEMOS mHealth intervention can meet these needs through blended lifestyle support to improve risk factors for CVD and dementia.

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