scholarly journals Caring for Moderate to Severe Dementia Patients - Malaysian Family Caregivers Experience

2020 ◽  
Vol 17 (1) ◽  
Author(s):  
Zuria Idura AM ◽  
Noorlaili MT ◽  
Rosdinom R ◽  
Azlin B ◽  
Tuti Iryani MD
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Kuala Lumpur ◽  
Severe Dementia ◽  
Individual Interviews ◽  
Care Giving ◽  
Dementia Patients ◽  
People With Dementia ◽  
Inadequate Knowledge ◽  
Geriatric Clinic

Introduction: Caring for those with dementia affects the quality of life for both the caregivers and the patients themselves, particularly in the informal care system here in Malaysia. To date, only a few studies have explored from the family caregivers’ perspectives in the communities of different cultural background. The purpose of this study is to describe the Malaysian family caregivers’ perspectives of their experiences in providing care to for their family members suffering from moderate to severe dementia in Kuala Lumpur, Malaysia. Methods: This qualitative study involved in-depth individual interviews with twelve caregivers to patients with moderate to severe dementia. Participants were recruited via purposive sampling from the outpatient psycho-geriatric clinic at UKM Medical Centre, Kuala Lumpur. All interviews were audio-recorded and transcribed verbatim. Transcribed data was later analysed using a thematic approach. Results: Four themes identified in this study were; i) the feeling that ‘it is like caring for a baby’, ii) the caregivers’ perception of inadequate knowledge and skills, iii) the need for caregivers’ support system and iv) the importance of spirituality in enhancing care giving experiences. Conclusions: The framework of care shared by the caregivers in this study demonstrated strong cultural and spirituality influences in addition to the common issues of the challenges in managing the behavioural and psychological symptoms in people with dementia. Hence, culture and spirituality aspects should be addressed in the development of appropriate intervention to manage the needs of informal caregivers in this community.

scholarly journals Impact of Social Isolation on People with Dementia and Their Family Caregivers

2021 ◽  
pp. 1-11
Author(s):  
Lílian Viana dos Santos Azevedo ◽  
Ismael Luis Calandri ◽  
Andrea Slachevsky ◽  
Héctor Gastón Graviotto ◽  
Maria Carolina Santos Vieira ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Clinical Symptoms ◽  
Memory Function ◽  
South American ◽  
Severe Dementia ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Severity Of Dementia

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

scholarly journals Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

2021 ◽  
Vol 13 ◽  
Author(s):  
Elena Carbone ◽  
Rocco Palumbo ◽  
Alberto Di Domenico ◽  
Silvia Vettor ◽  
Giorgio Pavan ◽  
...  
Keyword(s):  
Pilot Study ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Significant Negative Correlation ◽  
Healthcare Services ◽  
Individual Characteristics ◽  
Social And Emotional ◽  
Care Recipients ◽  
People With Dementia ◽  
Emotional Loneliness

IntroductionThe present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated.Materials and MethodsThirty-five caregivers of RwD attending formal healthcare services before the COVID-19 lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience.ResultsNo clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience.DiscussionOur findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.

scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral Symptoms of Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 2-3
Author(s):  
Magaly Ramirez ◽  
Miriana Duran ◽  
Chester Pabiniak ◽  
Kelly Hansen ◽  
James Ralston ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Hybrid Approach ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Virtual Training ◽  
Study Objective ◽  
People With Dementia ◽  
Traditional Service

Abstract STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that teaches family caregivers to manage behavioral and psychological symptoms of dementia (BPSD). The study objective was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. We conducted 15 semi-structured interviews with family caregivers of people with dementia. We showed caregivers prototypes of STAR-VTF online self-directed materials. We obtained caregiver feedback, focusing on needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said healthcare providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the healthcare organization to offer programs such as STAR-VTF much sooner. Many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities. Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers reported a preference for having the same coach for the program duration.

Characteristics and Real-Life Outcomes of Dementia and Cognitive Impairment at a Geriatric Clinic

2020 ◽  
Vol 49 (3) ◽  
pp. 312-320
Author(s):  
Kritapas Chulakadabba ◽  
Weerasak Muangpaisan ◽  
Pitiporn Siritipakorn ◽  
Titima Wongviriyawong ◽  
Patumporn Suraarunsumrit ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Psychological Symptoms ◽  
Real Life ◽  
Retrospective Chart Review ◽  
Acetylcholinesterase Inhibitors ◽  
Dementia Care ◽  
Subjective Cognitive Decline ◽  
Geriatric Syndromes ◽  
People With Dementia ◽  
Geriatric Clinic

<b><i>Background:</i></b> Various patterns of dementia care have been developed in different settings, depending on the availability of healthcare resources and facilities. The purpose of this study was to examine the epidemiology and characteristics of dementia care at a geriatric clinic, a field that has been subject to little prior evaluation. <b><i>Methods:</i></b> A retrospective chart review was undertaken of cohort patients with cognitive impairment who had received a diagnosis and were still on active follow-up at a geriatric clinic. A total of 892 patients were included. In addition, 203 geriatric patients with no cognitive impairment who attended the clinic during the study period were sampled as a control. <b><i>Results:</i></b> The main diagnoses of dementia were Alzheimer’s disease (AD) (40.1%), vascular dementia (16.9%), unspecified dementia (16.3%), mixed dementia (9.0%), AD with cerebrovascular disease (8.7%), and Parkinson’s disease dementia (6.1%). Atypical dementia was presented in 3.0% of cases. There were 178 patients with mild cognitive impairment, 20 with vascular cognitive impairment, and 18 with subjective cognitive decline. Other comorbidities were found in 97% of the subjects. Patients with cognitive impairment had a higher total number of other geriatric syndromes and higher percentages for delirium, falls, immobility, loss of appetite, and incontinence. Potentially reversible causes of dementia were found in 11.3% of the cases. Acetylcholinesterase inhibitors were administered to 61%, whereas 23.5% received an NMDA receptor antagonist. The need for a change in the antidementia medication was identified for 10.7% of the subjects; the major cause was adverse drug side effects. Nonpharmacological therapy only was administered to 52.4% of the people with dementia who had behavioral and psychological symptoms. <b><i>Conclusions:</i></b> Mixed brain pathologies, comorbidities, and the coexistence of other geriatric syndromes are common at geriatric clinics. Holistic, integrated, and continuous care are needed to improve the outcomes of patients with more complicated comorbidities.

scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

JMIR Aging ◽  
10.2196/24965 ◽  
2021 ◽  
Vol 4 (1) ◽  
pp. e24965
Author(s):  
Magaly Ramirez ◽  
Miriana C Duran ◽  
Chester J Pabiniak ◽  
Kelly E Hansen ◽  
Ann Kelley ◽  
...  
Keyword(s):  
Health Care ◽  
Training Program ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Challenging Behaviors ◽  
Care Organization ◽  
Virtual Training ◽  
People With Dementia ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Background Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

scholarly journals PSYCHOSOCIAL FACTORS INFLUENCING GHANAIAN FAMILY CAREGIVERS IN THE POST-OPERATIVE CARE OF THEIR HOSPITALISED PATIENTS

2015 ◽  
Vol 16 (2) ◽  
pp. 112-124 ◽  
Author(s):  
Lydia Aziato ◽  
O Adejumo
Keyword(s):  
Family Caregivers ◽  
Psychosocial Factors ◽  
Capital City ◽  
Surgical Patients ◽  
Surgical Department ◽  
Individual Interviews ◽  
Factors Influencing ◽  
Operative Care ◽  
Inadequate Knowledge ◽  
Hospitalised Patients

This study explored the psychosocial factors influencing family caregivers during the care of patients who underwent surgery and are in pain. Family caregivers play key roles in the care of post-surgical patients in different cultures. However, research has not adequately explored family caregivers’ experiences within the post-operative context in Ghana.An exploratory qualitative design was employed. Data collection involved individual interviews. Concurrent content analysis was undertaken and saturation of data was achieved with 12 family caregivers and one key informant. The participants were recruited from the surgical department of a tertiary health facility in Accra, the capital city of Ghana.The study revealed six themes that influenced family caregivers in the care of post-surgical patients: faith, fear, feeling of relief, empathy, commitment and inadequate knowledge. Health professionals should meaningfully integrate and educate family caregivers on patient care and pain management within the post-surgical context.

scholarly journals Protocol for constructing a support model for family caregivers of people with dementia: Barriers and requirements

2019 ◽  
Vol 7 ◽  
pp. 205031211882486
Author(s):  
Chia-Ming Yen
Keyword(s):  
Family Caregivers ◽  
Problem Behaviors ◽  
Family Relationships ◽  
Healthcare Professionals ◽  
Medical Center ◽  
Skills Training ◽  
Dementia Patients ◽  
People With Dementia ◽  
Central Taiwan ◽  
Support Model

Background: This report describes a protocol for determining the barriers and requirements of family caregivers for people with dementia. The perspectives of healthcare professionals, family caregivers, and dementia patients will be collected and analyzed to construct a support model of requirements. Methods: An in-depth interview and care diary will be adopted during Phase I. Subsequently, the Delphi technique will be conducted to transform opinions from participants into a group consensus. In total, 38 participants are expected to be recruited from the outpatients of the neurology, psychiatry, geriatrics, and family medicine departments of a medical center in central Taiwan. Five domains are to be examined systematically in terms of the barriers and requirements of family caregivers for people with dementia: (1) knowledge of dementia and care skills to cope with problem behaviors; (2) medication and comorbidity management; (3) family relationships and psychological support; (4) resources and benefits; and (5) education and skills training. Conclusion: Overall, the proposed protocol will construct a support model of requirements for family caregivers, which is expected to provide healthcare professionals, family caregivers, researchers, and policymakers with more concise information and insights into associated problems.

Volunteers in Palliative Care Make A Difference

2009 ◽  
Vol 25 (1) ◽  
pp. 30-39 ◽  
Author(s):  
Katrien G. Luijkx ◽  
Jos M.G.A. Schols
Keyword(s):  
Palliative Care ◽  
The Netherlands ◽  
Focus Groups ◽  
Family Caregivers ◽  
Life Stage ◽  
Terminally Ill ◽  
Individual Interviews ◽  
Terminally Ill Patients ◽  
Care Giving ◽  
Volunteer Support

Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. In four sequential studies, information was gathered from focus groups (n=22), a survey (n=237), individual interviews (n=6), and an Internet panel (n=1,712). The focus groups revealed that volunteers can make the last phase of life less stressful for family caregivers by offering practical and emotional support, and this was confirmed by the survey; however, one improvement is needed: every volunteer support should be concluded with a closing contact. The individual interviews showed that in the end-of-life stage the crucial decision is whether the patient can remain at home, not whether the caregiver needs volunteer support; and in such extreme situations, it is understood that volunteer support must involve more than one volunteer. The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.

Effectiveness of high-frequency individual reminiscence interventions using life story books on persons with dementia

2020 ◽  
pp. 030802262094593
Author(s):  
Tomoaki Asano ◽  
Chih-Wen Wang ◽  
Megumi Tsugaruya ◽  
Takashi Ishikawa
Keyword(s):  
Life Story ◽  
Psychological Symptoms ◽  
Control Group ◽  
Structured Interviews ◽  
Severe Dementia ◽  
Care Services ◽  
People With Dementia ◽  
Psychosocial Benefits ◽  
Experimental Group

Introduction Reminiscence therapy, using life story books, is a non-pharmacological treatment and helps promote psychosocial benefits in people with dementia. This research thus aimed to determine the effects of life story books among participants with dementia of different severities. Method The experimental group ( n = 36) underwent three semi-structured interviews over 10 weeks. After a 2-week life story books-production interval, the experimental group received the intervention over 4 weeks, five times weekly. The following 12 weeks were the follow-up period. The control group ( n = 30) underwent the first and last assessments, with a 6-month interval, while receiving their usual care services. Results Participants’ cognitive functioning was mostly maintained at follow-up in the experimental group, but significantly declined in the control group. The experimental group showed no significant change in cognition among participants with severe dementia during all periods, assessed using the behavioural and psychological symptoms of dementia, and the caregivers’ burden decreased significantly from before to after the intervention. Conclusion These results demonstrate that life story book interventions are an effective tool in improving the relationship between caregivers and people with dementia, and could help people with dementia maintain cognitive function, even those with severe dementia.

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