scholarly journals Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study

2020 ◽  
Vol 2020 ◽  
pp. 1-10
Author(s):  
María Cristina Lopes Dos Santos ◽  
María Victoria Navarta-Sánchez ◽  
José Antonio Moler ◽  
Ignacio García-Lautre ◽  
Sagrario Anaut-Bravo ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Psychosocial Adjustment ◽  
Family Members ◽  
Care Recipient ◽  
People With Dementia ◽  
Influential Variable ◽  
Adjustment To Illness

Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

Nursing Research in Parkinson’s Disease From 2006 to 2015

2016 ◽  
Vol 26 (2) ◽  
pp. 142-156 ◽  
Author(s):  
Ju Young Shin ◽  
Barbara Habermann
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregiving ◽  
Symptom Management ◽  
Family Members ◽  
Theoretical Models ◽  
Self Management ◽  
Nursing Research

Most people with Parkinson’s disease (PD) reside in their homes with their family members. Nurses are in a good position to partner with people with PD and their family members for better self-management of the disease and improved quality of life. The purpose of this systematic review was to assess the state of the science of nursing research related to PD during the 10-year period, 2006 to 2015. A total of 27 studies were included in this review. Family caregiving was the most studied topic, followed by symptom management/medication adherence, quality of life, end-of-life/palliative care, and functional status/improving function. Recommendations for future studies in PD include (a) developing and testing interventions based on theoretical models in the areas of self-management, symptom management, and function improvement in people with PD and for caregivers caring for people with advanced stage PD, and (b) building programs of research with interprofessional teams.

scholarly journals “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

2021 ◽  
pp. 1-13
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Jenny T. van der Steen ◽  
Marten Munneke ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Disease Burden ◽  
Mixed Methods Case Study ◽  
Palliative Phase

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

scholarly journals Being caregiver of people with Parkinson's Disease: experienced situations

2018 ◽  
Vol 71 (suppl 6) ◽  
pp. 2628-2634 ◽  
Author(s):  
Camila Padovani ◽  
Mislaine Casagrande de Lima Lopes ◽  
Ieda Harumi Higahashi ◽  
Sandra Marisa Pelloso ◽  
Marcelle Paiano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Family Care ◽  
Daily Routines ◽  
Efficient Care ◽  
Differentiated Care

ABSTRACT Objective: To understand the experience of caring for a person with Parkinson's Disease. Method: We used the qualitative study and thematic analysis with family caregivers of people with Parkinson's Disease. Results: Three thematic categories were identified, being: Feelings related to Parkinson's Disease; Changes in family daily routines; Caregiver strategies for self-care. Final considerations: Family care has shown the need for health services to provide caregivers support, as they experience situations of overload in care that can contribute to their illness. The findings also allow nurses to see the need for differentiated care for caregivers that, by assisting them with their needs, favor the quality of life of the caregiver, reduce the possibility of illness, allowing a more efficient care to the entity with chronic illness.

scholarly journals A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS-SR) with carers of people with Parkinson's disease

Nursing Open ◽  
2019 ◽  
Vol 6 (3) ◽  
pp. 1262-1268 ◽  
Author(s):  
Mari Carmen Portillo ◽  
Leire Ambrosio ◽  
Raquel Lanas Martín ◽  
Maria Victoria Navarta ◽  
MEugenia Ursua Sesma ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Pilot Study ◽  
Psychosocial Adjustment ◽  
Spanish Version ◽  
Adjustment To Illness

Critical issues of the biopsychosocial treatment of Parkinson’s disease

2015 ◽  
Vol 156 (12) ◽  
pp. 472-478 ◽  
Author(s):  
Péter Kincses ◽  
Norbert Kovács ◽  
Kázmér Karádi ◽  
János Kállai
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychological Health ◽  
Interdisciplinary Approach ◽  
Cognitive Status ◽  
Psychological Burden ◽  
Her Family ◽  
Critical Issues

This paper is a summary report on the basic questions of the biopsychosocial approach to Parkinson’s disease. It deals with cognitive, affective and psychological health issues which significantly influence the outcome of the physical rehabilitation. In spite of the unchanged cognitive status, the psychological burden of the changes in the quality of life, the obstruction, the change in the affective tone, and the shrinking ability to fulfil social roles decrease the patient’s quality of life. An interdisciplinary approach is best suited for mitigating these effects. Not only the patient but also his/her family and environment is seriously affected by the disease and its consequences. Treatment and rehabilitation options for increasing or maintaining the quality of life of the affected patients are diverse, and significantly depend on the features of the health care system. The authors believe that the following review emphasizing health psychological principles may contribute to the work of professionals working in clinical and rehabilitational fields and through them may increase the quality of life of patients and their family. Orv. Hetil., 2015, 156(12), 472–478.

scholarly journals The Parkinson’s Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson’s Disease in Patients and their Carers

2021 ◽  
pp. 1-15
Author(s):  
Eduardo Tolosa ◽  
Georg Ebersbach ◽  
Joaquim J. Ferreira ◽  
Olivier Rascol ◽  
Angelo Antonini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Impact Assessment ◽  
Real World ◽  
European Countries ◽  
Life Questionnaire ◽  
Motor Symptoms ◽  
Non Motor Symptoms

Background: A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice. Objective: The Parkinson’s Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers. Methods: PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI). Results: Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8% . Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6). Conclusions: The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.

Effects of music-based movement therapy on motor function, balance, gait, mental health, and quality of life for patients with Parkinson’s disease: A systematic review and meta-analysis

2021 ◽  
pp. 026921552199052
Author(s):  
Zonglei Zhou ◽  
Ruzhen Zhou ◽  
Wen Wei ◽  
Rongsheng Luan ◽  
Kunpeng Li
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Function ◽  
Meta Analysis ◽  
Freezing Of Gait ◽  
Movement Therapy ◽  
Walking Velocity

Objective: To conduct a systematic review evaluating the effects of music-based movement therapy on motor function, balance, gait, mental health, and quality of life among individuals with Parkinson’s disease. Data sources: A systematic search of PubMed, Embase, Cochrane Library, Web of Science, PsycINFO, CINAHL, and Physiotherapy Evidence Database was carried out to identify eligible papers published up to December 10, 2020. Review methods: Literature selection, data extraction, and methodological quality assessment were independently performed by two investigators. Publication bias was determined by funnel plot and Egger’s regression test. “Trim and fill” analysis was performed to adjust any potential publication bias. Results: Seventeen studies involving 598 participants were included in this meta-analysis. Music-based movement therapy significantly improved motor function (Unified Parkinson’s Disease Rating Scale motor subscale, MD = −5.44, P = 0.002; Timed Up and Go Test, MD = −1.02, P = 0.001), balance (Berg Balance Scale, MD = 2.02, P < 0.001; Mini-Balance Evaluation Systems Test, MD = 2.95, P = 0.001), freezing of gait (MD = −2.35, P = 0.039), walking velocity (MD = 0.18, P < 0.001), and mental health (SMD = −0.38, P = 0.003). However, no significant effects were observed on gait cadence, stride length, and quality of life. Conclusion: The findings of this study show that music-based movement therapy is an effective treatment approach for improving motor function, balance, freezing of gait, walking velocity, and mental health for patients with Parkinson’s disease.

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

Sign in / Sign up

Export Citation Format

Share Document