scholarly journals Do Family Caregivers of Dementia Patients Feel Competent in Pain Management?

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 943-943
Author(s):  
Hui Zhao ◽  
Pamela Kulbok ◽  
Ishan Williams ◽  
Carol Manning ◽  
Rafael Romo
Keyword(s):  
Older Adults ◽  
Pain Management ◽  
Family Caregivers ◽  
Deep Understanding ◽  
Perceived Competence ◽  
Structured Interviews ◽  
Loved One ◽  
Care Givers ◽  
Dementia Patients ◽  
Constant Comparative Analysis

Abstract Older adults with dementia rely on others to recognize and treat their pain and will ultimately become dependent. Family caregivers (FCGs) play a crucial role in pain management, yet limited data is available regarding the factors that impact their abilities. This qualitative descriptive study sought a deep understanding of FCGs perception of their abilities to manage pain for a loved-one with dementia. A sample of 25 adult family caregivers of community-based older adults with dementia was recruited in central Virginia. Participants were 29 to 95 years old, predominantly white, married, female, and high school graduates. We conducted semi-structured interviews that were audio recorded and analyzed using constant comparative analysis. Participants’ who perceived greater competence with pain management reported less pain for their loved-one, and their level of confidence was influenced by 3 factors: progress and stage of dementia: this increases the complexity of care, affecting FCGs ability to manage pain and engendering a self-perception of incompetence; developing adaptive mechanisms: built self-efficacy and improved FCGs perceived competence;, and support from professionals: a greater degree of support alleviated FCGs concerns and instill new skills, Effective pain management depended on family caregivers’ belief in their own abilities, and perceived competence could be improved by learning new skills or making adaptations. Professional care givers need to routinely assess FCGs abilities and provide adequate interventions.

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.

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.

The Importance of Religiosity to the Well-Being of African American Older Adults Living With Dementia

2018 ◽  
Vol 39 (5) ◽  
pp. 509-518 ◽  
Author(s):  
Fayron Epps ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Family Caregivers ◽  
Family Involvement ◽  
Health Care Providers ◽  
Well Being ◽  
Religious Practices ◽  
Care Providers ◽  
Religious Activities ◽  
Structured Interviews

This study was a post hoc analysis of a larger qualitative descriptive study exploring family involvement in health promotion activities for African Americans living with dementia where participants identified religious practices as meaningful health promotion activities. The purpose of this study was to explore ways in which religiosity may influence the well-being of older adults living with dementia. Semi-structured interviews were conducted among a sample of 22 family caregivers and 15 older adults living with dementia ( N = 37). Three themes emerged: Engagement, Promotion of Faith and Spiritual Connectedness, and Maintenance of Religious Practices. It is imperative for family caregivers to understand the important contributions of religious activities and beliefs to the well-being of their family member. This information might be of use for faith communities, policy makers, and health care providers in the provision of optimal person-centered care and the promotion of quality of life for persons living with dementia.

scholarly journals Cancer-Related Pain in Older Adults Receiving Palliative Care: Patient and Family Caregiver Perspectives on the Experience of Pain

2013 ◽  
Vol 18 (6) ◽  
pp. 293-300 ◽  
Author(s):  
Christine J McPherson ◽  
Thomas Hadjistavropoulos ◽  
Michelle M Lobchuk ◽  
Kelly N Kilgour
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
Pain Management ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Older Patients ◽  
Main Category ◽  
Home Setting ◽  
Living With Cancer

BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting.OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers.METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers.RESULTS: The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain.CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged.

scholarly journals Disruption, control and coping: responses of and to the person with dementia in hospital

2013 ◽  
Vol 35 (1) ◽  
pp. 37-63 ◽  
Author(s):  
DAVINA POROCK ◽  
PHILIP CLISSETT ◽  
ROWAN H. HARWOOD ◽  
JOHN R. F. GLADMAN
Keyword(s):  
Participant Observation ◽  
Family Care ◽  
Sense Of Control ◽  
Care Giver ◽  
Structured Interviews ◽  
Coping Responses ◽  
Care Givers ◽  
Sharing Space ◽  
Person With Dementia ◽  
Constant Comparative Analysis

ABSTRACTThis qualitative study aimed to gain insight into the experience of hospitalisation from the perspectives of the older person with dementia, their family care-giver and other patients sharing the ward (co-patients). Non-participant observation of care on 11 acute hospital wards was supplemented by 39 semi-structured interviews with 35 family care-givers and four co-patients following discharge. Constant comparative analysis produced the core problem facing all those involved: disruption from normal routine meaning that the experience of hospitalisation was disrupted by the presence and behaviour of the person with dementia. Disruption adversely affected the person with dementia, triggering constructive, disengaged, distressed and neutral behaviours. Using Kitwood's model of person-centred care, these behaviours were interpreted as attempts by the person with dementia at gaining a sense of control over the unfamiliar environment and experience. Family care-givers' lives and experiences both inside and outside the hospital were disrupted by the hospitalisation. They too attempted to gain a sense of control over the experience and to give a sense of control to the patient, co-patients and staff. Co-patients experienced disruption from sharing space with the person with dementia and were left feeling vulnerable and sometimes afraid. They too attempted to gain a sense of control over their situation and give some control by helping the person with dementia, the family care-giver and the staff.

scholarly journals Exploring the Patient-Provider Relationship in Older Adult Pain Management

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 945-946
Author(s):  
Sophia Sheikh ◽  
Natalie Spindle ◽  
Jennifer Brailsford ◽  
Jason Beneciuk ◽  
Monika Patel ◽  
...  
Keyword(s):  
Older Adults ◽  
Pain Management ◽  
Older Adult ◽  
Pain Treatment ◽  
Healthcare Providers ◽  
Educational Interventions ◽  
Structured Interviews ◽  
Patient Centered ◽  
Study Objective ◽  
Management Approaches

Abstract Successful health outcomes in older patients are linked to the quality of the patient-provider relationship. Our study objective was to further understand the role of this relationship specific to pain management through perspectives from older adults and healthcare providers. Semi-structured interviews and focus groups were conducted with 9 older adults and 11 multidisciplinary healthcare providers. Transcripts were analyzed using a thematic analysis. Three main concepts emerged: (1) defining pain management goals — differences in providers and patients’ goals for pain and function, with sub-themes of realistic goal setting and a shift in pain treatment to minimize opioids as a first-line medication; (2) communication — perceived gap in providers communicating and coordinating across disciplines and with patients, with sub-themes of improving positive communication and inconsistent messaging among providers; and (3) therapeutic alliance — all parties feel that developing a relationship is built on consistent trust and open dialogue. Although providers and older adults often expressed similar perspectives, there were several areas of misalignment identified within each concept, representing areas of disconnect within the patient-provider pain management relationship. Our findings indicate providers could benefit from education on improving communication around realistic goals and patient-centered outcomes and incorporation of more holistic pain management approaches when working with older adult patients. Further study should focus on developing educational interventions to address the identified shortcomings.

scholarly journals A TELEHEALTH DELIRIUM COACHING INTERVENTION FOR FAMILY CAREGIVERS OF OLDER ADULTS WITH ALZHEIMER’S DISEASE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S844-S844
Author(s):  
Deborah A D’Avolio ◽  
Andra Opalinski ◽  
David Newman
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
General Health ◽  
Community Dwelling ◽  
Structured Interviews ◽  
Coaching Intervention ◽  
Sf 36 ◽  
Post Test ◽  
Delirium Prevention ◽  
Human Connection

Abstract The purpose of this study is to develop and evaluate the feasibility of a telehealth coaching intervention for delirium prevention among family caregivers (FCs) of community-dwelling older adults with dementia. This study used an explanatory mixed methods design in which survey data was augmented with semi-structured interviews. A purposive sample of 20 older adult dyads participated. The intervention consisted of 6-weeks of telephone coaching sessions. FCs conducted daily delirium assessments. We employed correlations and GLM to investigate the relationships between variables and the outcomes. Results: The model showed a statistically significant positive correlation between the Human Connection Scale and the SF-36 pretest domain of general health (r= .47, p= .04). There were statistically significant positive correlations between the Human Connection Scale and the SF-36 posttest domains of physical functioning (r= .54, p= .014) and general health (r= .76, p<.001). There were a small positive changes in mean scores on each domain between the pre- and post-test scores on the SF-36. The most impressive findings came from FCs identification of delirium using the FAM-CAM. These participants had no history of delirium but 6 of 20 (30%) reported at least one episode of delirium. The qualitative data revealed that FGs found weekly coaching sessions beneficial and supportive. The results suggests that the intervention has a meaningful impact on how we assess delirium in the community and warrants further study.

scholarly journals Qualitative exploration of the experiences of informal care-givers for dependent older adults in Mexico City

2018 ◽  
Vol 39 (11) ◽  
pp. 2377-2396 ◽  
Author(s):  
Liliana Giraldo-Rodríguez ◽  
Nathalia Guevara-Jaramillo ◽  
Marcela Agudelo-Botero ◽  
Dolores Mino-León ◽  
Mariana López-Ortega
Keyword(s):  
Older Adults ◽  
Mexico City ◽  
Informal Care ◽  
Family Care ◽  
Structured Interviews ◽  
Care Needs ◽  
Cross Sectional ◽  
Term Care ◽  
Care Givers ◽  
Care Giving

AbstractPopulation ageing and increasing prevalence of chronic diseases and their consequences, changes in family structure and a decrease in the potential pool of family care, increase the need for formal long-term care for older adults in Mexico, and the need to understand the experiences of informal care-givers and how this impacts their social, family and personal conditions. This study investigates the experience of informal care-givers of dependent older adults using a cross-sectional qualitative study with an ethnographic focus. Thematic analysis was performed. The study comprised 48 semi-structured interviews with care-givers of dependent older adults who are beneficiaries of an in-home medical programme in Mexico City. The average age of care-givers was 54.7 years (standard deviation = 13.1, range = 24–86) and 75 per cent (36) were women. Results show care-giving experiences are diverse and complex, and profoundly affect the care-giver's life in terms of emotional burden, health deterioration and adverse life conditions due to economic deprivation. They also revealed key aspects such as the need to improve communication between care-givers and health-care personnel, the need for training about specific care needs and opportunity costs incurred. This information can serve as a basis for generating support strategies that may be integrated into the in-home programme. It is essential to promote actions that consider the ‘dependent older adult–informal care-giver’ dyad, and that aim to reduce the care-giving burden.

scholarly journals Perceived value of support for older adults coping with multi-morbidity: patient, informal care-giver and family physician perspectives

2015 ◽  
Vol 36 (9) ◽  
pp. 1891-1914 ◽  
Author(s):  
GAYATHRI NAGANATHAN ◽  
KERRY KULUSKI ◽  
ASHLINDER GILL ◽  
LIISA JAAKKIMAINEN ◽  
ROSS UPSHUR ◽  
...  
Keyword(s):  
Older Adults ◽  
Informal Care ◽  
Health And Safety ◽  
Perceived Value ◽  
Family Health ◽  
Family Physicians ◽  
Care Giver ◽  
Structured Interviews ◽  
Supportive Services ◽  
Care Givers

ABSTRACTThis study investigated the perceived value of informal and formal supports for older adults with multi-morbidity from the perspectives of patients, care-givers and family physicians. Semi-structured interviews were conducted with 27 patients, their informal care-givers and their family physicians in an urban academic family health team in Ontario. Analysis was conducted using a General Inductive Approach to facilitate identification of main themes and build a framework of perceived value of supports. Participant views converged on supports that facilitate patient independence and ease care-giver burden. However, important differences in participant perceptions arose regarding these priorities. Physicians and care-givers valued supports that facilitate health and safety while patients prioritised supports that enable self-efficacy and independence. While formal supports which eased care-giver burden were viewed positively by all members of the triad, many patients also rejected formal supports, citing that informal support from their care-giver was available. Such conflicts between patient, care-giver and physician-perceived value of supports may have important implications for consumer and care-giver willingness to accept formal supports when supports are available. These findings contribute to the broader literature on community-based care by incorporating the perspectives of patients, informal care-givers and family physicians to understand better the barriers and facilitators of uptake of supportive services that contribute to successful ageing at home.

scholarly journals SOCIAL ISOLATION, LONELINESS, AND CAREGIVER BURDEN AMONG PAID AND UNPAID CAREGIVERS OF HOMEBOUND OLDER ADULTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S967-S967
Author(s):  
Amy Y Sun ◽  
Emily Finkelstein ◽  
Karin Ouchida
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Social Isolation ◽  
Support Groups ◽  
Caregiver Burden ◽  
Chronically Ill ◽  
Structured Interviews ◽  
Socially Isolated ◽  
Homebound Older Adults ◽  
Paid Caregivers

Abstract Caregivers of homebound older adults may have high levels of burden and more vulnerability to social isolation and loneliness, given that their care recipients are more physically frail and isolated. Existing literature has not fully investigated differences between paid and unpaid caregiver burden or their experiences of social isolation. We interviewed paid (n=21) and unpaid family caregivers (n=22) of homebound older adults in a hospital-affiliated geriatric house call program. We used validated survey instruments to measure social isolation, loneliness, and caregiver burden, and semi-structured interviews to solicit qualitative data. In our sample, 42% of caregivers helped with 5+ ADLs and 58% with 5+ iADLs. Using the Caregiver Burden Inventory, burden types between caregivers were compared with chi-squared tests. Compared to paid caregivers, unpaid family caregivers experienced more “developmental” burden such as “missing out on life” (p<0.01). Paid caregivers exhibited more “time” burden, such as “not having a minute’s break from caregiving responsibilities” (p<0.01). 44% of caregivers were considered socially isolated according to the Berkman-Syme Social Index. However, using the UCLA 3-item Loneliness Scale, few caregivers felt lonely (14%). Thematic analysis revealed that family caregivers desired support groups but time pressures limited their participation (23%). Interestingly, smart phones were regularly cited as a tool for alleviating loneliness for paid caregivers when alone on the job (19%), a novel finding. Findings suggest that caregivers of the chronically ill and physically isolated may be at particular risk of social isolation. Network based social support interventions may mitigate some of these vulnerabilities.

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