Caregiver burden and its related factors in advanced Parkinson’s disease: data from the PREDICT study

Tessitore, Alessandro; Marano, Pietro; Modugno, Nicola; Pontieri, Francesco E.; Tambasco, Nicola; Canesi, Margherita; Latorre, Anna; Lopiano, Leonardo; Sensi, Mariachiara; Quatrale, R.; Solla, Paolo; Defazio, Giovanni; Melzi, Gabriella; Costanzo, Anna Maria; Gualberti, Giuliana; Paparatti, Umberto di Luzio; Antonini, Angelo

doi:10.1007/s00415-018-8816-9

Cited by 53 publications

(66 citation statements)

References 26 publications

(37 reference statements)

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“…71 Therefore, other approaches, such as nonpharmacologic therapies, should be investigated. However, the patient's functioning is also dependent on how partners or caregivers cope with the disease of their loved one and the extent to which this influences their own lives.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…Some studies focusing on this issue have been published, but we considered caregiver outcomes to be beyond the scope of this review. 71,72 4.3 | Implications for research, policy, and practice Our review identified several correlates of impaired social role performance in PD, including disease severity, anxiety, depression, and cognitive impairment. However, less attention has been paid to interventions or methods of preserving or improving social role functioning.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

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Social role functioning in Parkinson's disease: A mixed‐methods systematic review

Perepezko

Hinkle

Shepard

et al. 2019

Int J Geriat Psychiatry

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Objectives Parkinson's disease (PD) is a progressive neurodegenerative disease that often impedes activities of daily living (ADL) and social functioning. Impairment in these areas can alter social roles by interfering with employment status, household management, friendships, and other relationships. Understanding how PD affects social functioning can help clinicians choose management strategies that mitigate these changes. Methods We conducted a mixed‐methods systematic review of existing literature on social roles and social functioning in PD. A tailored search strategy in five databases identified 51 full‐text reports that fulfilled the inclusion criteria and passed the quality appraisal. We aggregated and analyzed the results from these studies and then created a narrative summary. Results Our review demonstrates how PD causes many people to withdraw from their accustomed social roles and experience deficits in corresponding activities. We describe how PD symptoms (eg, tremor, facial masking, and neuropsychiatric symptoms) interfere with relationships (eg, couple, friends, and family) and precipitate earlier departure from the workforce. Additionally, several studies demonstrated that conventional PD therapy has little positive effect on social role functioning. Conclusions Our report presents critical insight into how PD affects social functioning and gives direction to future studies and interventions (eg, couple counseling and recreational activities).

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Section: Strengths and Limitationsmentioning

confidence: 99%

Section: Strengths and Limitationsmentioning

confidence: 99%

Social role functioning in Parkinson's disease: A mixed‐methods systematic review

Perepezko

Hinkle

Shepard

et al. 2019

Int J Geriat Psychiatry

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“…Mindfulness could help to improve coping and reduce stress of the caregivers. In PD, the caregiving situation becomes increasingly stressful with disease progression [4,44,47,50,52] and mindfulness might be particularly helpful during later stages of the disease. Additionally, mindfulness may help to mitigate caregivers' tendency to overcommit in the caregiver role [53][54][55][56].…”

Section: Discussionmentioning

confidence: 99%

Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

et al. 2020

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Parkinson’s disease (PD) is a neurodegenerative movement disorder with progressive impairments in activities of daily living. With disease progression, people with PD (PwP) need more help and care from their spouses or professional caregivers. Identifying factors that help caregivers to cope with their burden is needed to frame future interventions for PwP caregivers. Mindfulness and psychological flexibility might be factors contributing to resilience against the burden of giving care. In this cross-sectional questionnaire-based study, 118 PwP and their respective primary caregivers were included. Caregivers reported moderate burden and only mild depressive symptoms. Mindfulness measured by the Mindfulness Attention and Awareness scale (p 0.003) and psychological flexibility measured by Acceptance and Actions Questionnaire II (p 0.001) correlated negatively with caregiver burden. Data from this study indicate mindfulness and psychological flexibility are factors contributing to resilience against caregiver burden. Future interventions to reduce burden in PwP caregivers might be improved by the inclusion of mindfulness training programs.

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“…Caregiving involves significant time contributions, emotional commitment, and physical labor-and reduced involvement or relinquishing of previously valued roles-on the part of the person providing care, all of which may lead to adverse and compromised health and wellbeing outcomes (Carretero et al 2009). While this concept of burden has been extremely influential (Burke et al 2018;Tessitore et al 2018), highlighting the importance of carer wellbeing, it has simultaneously led people to think about caring in negative terms precisely because it constructs the care relationship as unidirectional, in which the independence and autonomy of the carer is compromised by the care needs of the dependent care-recipient.…”

Section: Care and Burdenmentioning

confidence: 99%

Neurodegeneration and the Intersubjectivities of Care

Warren

Sakellariou

2019

Medical Anthropology

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Caring for a family member or friend with a serious health condition is a common feature of social life. Often, such care is framed as a burden, an unwelcome rupture in the fabric of everyday life. We draw on research conducted in Australia and the UK to examine care in the everyday lives of people living with and caring for neurodegenerative diseases and to trouble care as a burden. Participants in our studies mobilized practices of care to collaboratively produce a "good life". We argue that above all, care is a relational, enacted practice requiring examination in its local context.Caring for a family member or friend with a serious health condition is a common feature of social life, and particularly family life, globally (Seltzer and Heller 1997). Within highly industrialized settings, this is due, at least in part, to strong preferences by policy makers and funders, health providers, advocacy groups, and community members to move care away from institutionalized or residential (care facility) settings (Heaton 1999). Considerable efforts have been made to develop strategies to support people to remain in their homes for as long as possible, through subvention (grants) or pensions, caregiver support programs and advocacy, caregiver counselling services, and government-sponsored respite care. However, there is considerable variance between countries in how this is realized. In this article, we focus on research conducted in two settings-Australia and the UK-to examine the effects of these political shifts on the everyday lives of people living with and caring for age-related neurodegenerative diseases, and to consider how ideas of a good life are collaboratively produced and put into practice through acts of care. Our attention to two differentyet complementary-landscapes of care helps us bring in dialog the different ways people negotiate and assemble practices of care.Care is a relational, intersubjective activity that emerges in the spaces between people, and through practical activities that are performed by one person with or for another (Sakellariou 2016;Warren and Ayton 2018). It is idiosyncratic and takes diverse forms, from preparing medications-getting tablets out of a bottle and putting them beside a morning coffee cup, to doing activities (such as going to the pharmacy to collect medications, or doing grocery shopping or gardening), to accompanying someone to their weekly support group meeting, to toileting and bathing. Even within any one activity, caregivers and care recipients negotiate, adjust, devise and innovate, employ trial and error, and resist in order to develop strategies and practices, often with the purpose to avoid undesired outcomes and produce a good life, however defined, with a chronic condition. Through in-depth descriptions and analyses of what happens in specific instances, including those interactions when people negotiate care to effect some sort of change that can be evaluated as "good", we seek to problematize the notion of "burden" in the context of care and argue for a f...

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Caregiver burden and its related factors in advanced Parkinson’s disease: data from the PREDICT study

Cited by 53 publications

References 26 publications

Social role functioning in Parkinson's disease: A mixed‐methods systematic review

Social role functioning in Parkinson's disease: A mixed‐methods systematic review

Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

Neurodegeneration and the Intersubjectivities of Care

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