Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients
For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change...
| Main Authors: | , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2021-12-01
|
| Series: | Brain Sciences |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2076-3425/11/12/1629 |
| _version_ | 1797506457660293120 |
|---|---|
| author | Franziska Thieken Marlena van Munster |
| author_facet | Franziska Thieken Marlena van Munster |
| author_sort | Franziska Thieken |
| collection | DOAJ |
| description | For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible. |
| first_indexed | 2024-03-10T04:32:56Z |
| format | Article |
| id | doaj.art-9598fb248511489a9d81fa2954d6b2ae |
| institution | Directory Open Access Journal |
| issn | 2076-3425 |
| language | English |
| last_indexed | 2024-03-10T04:32:56Z |
| publishDate | 2021-12-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Brain Sciences |
| spelling | doaj.art-9598fb248511489a9d81fa2954d6b2ae2023-11-23T04:02:19ZengMDPI AGBrain Sciences2076-34252021-12-011112162910.3390/brainsci11121629Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible PatientsFranziska Thieken0Marlena van Munster1Department of Neurology, University Hospital of Marburg, Baldingerstraße, 35043 Marburg, GermanyFaculty of Medicine, Philipps-Universität Marburg, Biegenstraße 10, 35037 Marburg, GermanyFor persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.https://www.mdpi.com/2076-3425/11/12/1629Parkinson’s diseaseinformal caregivercaregivingcaregiver burdenpersonalized careco-diagnosis |
| spellingShingle | Franziska Thieken Marlena van Munster Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients Brain Sciences Parkinson’s disease informal caregiver caregiving caregiver burden personalized care co-diagnosis |
| title | Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients |
| title_full | Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients |
| title_fullStr | Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients |
| title_full_unstemmed | Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients |
| title_short | Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients |
| title_sort | deriving implications for care delivery in parkinson s disease by co diagnosing caregivers as invisible patients |
| topic | Parkinson’s disease informal caregiver caregiving caregiver burden personalized care co-diagnosis |
| url | https://www.mdpi.com/2076-3425/11/12/1629 |
| work_keys_str_mv | AT franziskathieken derivingimplicationsforcaredeliveryinparkinsonsdiseasebycodiagnosingcaregiversasinvisiblepatients AT marlenavanmunster derivingimplicationsforcaredeliveryinparkinsonsdiseasebycodiagnosingcaregiversasinvisiblepatients |