Parkinson’s Disease Caregiving: Implications for Care Management

Parrish, Monique; Giunta, Nancy; Adams, Sara

doi:10.1891/cmaj.4.1.53.57471

Cited by 12 publications

(8 citation statements)

References 1 publication

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“…This is in agreement with other studies comparing family caregivers of persons with PD with other family caregivers where it was noted that those who care for patients with PD 'demonstrated increased depression and other health conditions'. 30 To ease caregiver burden, Caap-Ahlgren and Dehlin 31 counsel paying attention to the functional status of the patient and to indicators of the depressive state of the caregiver.…”

Section: Care Givingmentioning

confidence: 99%

Palliative care and Parkinson's disease: managing the chronic-palliative interface

Lanoix

2009

Chronic Illness

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The increasing numbers of individuals needing palliative services and changing the nature of these services bring about new challenges for the delivery and accessibility of timely and appropriate palliative care services. Socioeconomic factors are known to affect access but disease type is a factor which can negatively impact the availability of adequate palliative services. The purpose of this article is to examine the barriers to palliation for chronic illnesses that span long periods of time. My analysis centers on palliation for Parkinson's disease because it illustrates the difficulties of managing the chronic-palliative interface, and it also demonstrates how care is situated in an evolving network of professional and non-professional actors. I argue that insuring the availability of adequate palliative services entails negotiating the chronic-palliative interface, which, in turn, requires continued multi-disciplinary professional involvement as well as the integration and recognition of the care provided by family caregivers.

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Section: Care Givingmentioning

confidence: 99%

Palliative care and Parkinson's disease: managing the chronic-palliative interface

Lanoix

2009

Chronic Illness

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“…Table 4 summarizes data from our evaluation of key recent international studies of PD caregiver strain. The results show world-wide data demonstrating that care-giver strain is challenging and common, with many shared features between south-east Asia and other regions of the globe, as seen in the world-wide literature ( 40 – 79 ).…”

Section: Resultsmentioning

confidence: 56%

“…Regardless of geographical, cultural, and geopolitical differences, caregiver strain in PD is a major problem world-wide and correlates with disease severity ( 40 – 79 ). Our study showed that most south-east Asian PD caregivers are family members.…”

Section: Discussionmentioning

confidence: 99%

“…Our results are consistent with European ( 8 ) and American literature [eg., ( 28 , 40 , 41 )] showing more female than male PD care providers, given that Parkinsonism more often affects men. Previous studies have also shown close relationships between disability and quality of life in people with PD and the level of burden in caregivers ( 42 ).…”

Section: Discussionmentioning

confidence: 99%

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Parkinson's Disease Caregiver Strain in Singapore

et al. 2020

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Background: Caregiver strain is recognized globally with Parkinson's disease (PD). Comparatively little is understood about caregiver burden and strain in Asia. Objective: To investigate caregiver strain for families living with PD in Singapore, in light of international data. Methods: Ninety-four caregivers were recruited via people living with idiopathic PD in Singapore. Caregiver strain was assessed using the Zarit Burden Interview (ZBI); health status was assessing using the Cumulative Illness Rating Scale for Geriatrics (CIRS-G). PD disability measures were the Unified Parkinson's Disease Rating Scale (UPDRS) and modified Hoehn and Yahr (1967) Scale. Results: Primary caregivers of people living with PD in Singapore were mostly cohabiting spouses, partners or offspring. Around half employed foreign domestic helpers. Mean caregiving duration was 5.9 years with an average of eight hours per day spent in caregiving roles. Most care providers were comparatively healthy. Caregivers reported significant levels of strain which increased with greater level of disability (r = 0.36, n = 94, p < 0.001). Associations were significant between caregiver strain and scores on the UPDRS mentation, behavior, and mood subscales [r = 0.46, n = 94, p < 0.001, 95% CI (0.28, 0.60)]. High scores on the UPDRS activities of daily living subscale were associated with caregiver strain [r = 0.50, n = 94, p < 0.001, CI (0.33, 0.64)]. Conclusion: Most caregivers in this Singapore sample reported high levels of strain, despite comparatively good physical function. Caregiver strain in PD spans geopolitical and cultural boundaries and correlates with disease severity. These results support the need for better early recognition, education, and support for caregivers of people living with PD.

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“…This neurodegenerative disease manifests itself particularly in persons over the age of 65 (Alves, Forsaa, Pedersen, Dreetz Gjerstad, & Larsen, 2008). Of these, 90% live at home, and most are cared for by an elderly spouse (Parrish, Giunta, & Adams, 2003). It is usually at the moderate stage of PD that affected persons begin to require assistance and that spouses begin progressively to assume their caregiver role (Bogard, 2010).…”

mentioning

confidence: 99%

Living With Moderate-Stage Parkinson Disease

Beaudet

Ducharme

2013

Journal of Neuroscience Nursing

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The purpose of this study was to identify the principal intervention needs of elderly couples living with moderate-stage Parkinson disease and their preferences regarding the modalities of a possible nursing intervention. The study's framework of reference consisted of the transitions theory developed by Meleis, Sawyer, Im, Hilfinger Messias, and Schumacher (2000) and of the systemic approach developed by Wright and Leahey (2009). A qualitative design and a participative process were employed. Ten couples were interviewed dyadically. Intra- and interdyad content analyses were performed. Results indicate that the principal intervention needs of couples are geared to developing effective strategies for remaining healthy and planning for the future, to improving communication between spouses and with the formal and informal support networks, and to adopting concerted strategies to facilitate problem solving and role adjustment. Couples would prefer six or seven dyadic meetings, each 60-90 minutes long, every 2 weeks, at an easily accessible location. This study affords avenues for the conceptualization of a psychoeducational nursing intervention intended for couples where a spouse has moderate-stage Parkinson disease.

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Parkinson’s Disease Caregiving: Implications for Care Management

Cited by 12 publications

References 1 publication

Palliative care and Parkinson's disease: managing the chronic-palliative interface

Palliative care and Parkinson's disease: managing the chronic-palliative interface

Parkinson's Disease Caregiver Strain in Singapore

Living With Moderate-Stage Parkinson Disease

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