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 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.

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The use of eHealth to promote physical activity in people living with Parkinson’s disease: A systematic review

Physiotherapy Practice and Research ◽

10.3233/ppr-200474 ◽

2021 ◽

pp. 1-14

Author(s):

Adam McDermott ◽

Ciaran Haberlin ◽

Jonathan Moran

Keyword(s):

Physical Activity ◽

Systematic Review ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Risk Of Bias ◽

Attrition Rate ◽

Medical Subject Headings ◽

Eligibility Criteria ◽

Ehealth Intervention ◽

High Level

BACKGROUND: People living with Parkinson’s disease (PD) are less active than healthy individuals. Ehealth is an emerging concept in healthcare which presents opportunities to promote physical activity (PA) in people with PD. The aim of this systematic review was to explore the effectiveness of ehealth in the promotion of PA in people living with PD. METHODS: Suitable articles were searched for using EMBASE, PsychInfo, Web of Science and OVID Medline databases using a combination of keywords and medical subject headings. Articles were included if they described an ehealth intervention designed to promote PA in people living with PD. Two reviewers screened studies for suitability and extracted data. Risk of bias was assessed using the Cochrane risk of bias 2 tool and the Downs and Black risk of bias checklist. Due to the heterogeneity of studies, a narrative synthesis of study interventions and results was completed rather than a quantitative analysis. RESULTS: 1449 articles were screened. Four studies met the eligibility criteria which included 652 participants. Web and mobile applications were used to design the PA interventions. PA levels were measured using self-reported questionnaires, Fitbits, activity monitors and accelerometers. Three of the studies reported improvements in aspects of PA. However, this was not consistently reported in all study participants. No adverse effects, a high level of enjoyment and a relatively low attrition rate (∼12.5%) were reported. CONCLUSION: Ehealth is a safe and feasible intervention to promote PA in this population. It is unclear whether ehealth is effective at promoting PA in people with PD. Keywords:

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Schizophrenia as Potential Trigger for Melanoma Development and Progression! The Psycho-Neuro-Endocrine-Oncology (P.N.E.O) Network!

Open Access Macedonian Journal of Medical Sciences ◽

10.3889/oamjms.2018.276 ◽

2018 ◽

Vol 6 (8) ◽

pp. 1442-1445

Author(s):

Georgi Tchernev ◽

Ilia Lozev ◽

Ivanka Temelkova ◽

Svetoslav Chernin ◽

Irina Yungareva

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Nervous Tissue ◽

World Literature ◽

Careful Analysis ◽

Potential Trigger ◽

Patient Groups ◽

Neuroectodermal Origin ◽

High Level ◽

First Time

BACKGROUND: Skin, nervous tissue, dopamine and melanoma share a common neuroectodermal origin. Hence, processes that modulate nervous tissue formation, patient mental status, motor regulation of individuals, and skin cancerogenesis are inextricably linked. Psycho-neuro-endocrine oncology (or dermato-oncology), i.e. P.N.E.O., is a new model or trend in medicine and science presented for the first time in the world literature by us, that aims to examine the relationship between the mental state, the hormones and the malignant transformation. Schizophrenia and Parkinson’s disease are the two main patterns of disease where the main symptoms are related to dopamine levels in the human body. According to our analyses of the available literature, the amount of dopamine is related to the incidence of melanocytic or non-melanocytic cutaneous tumours in patients with central nervous system diseases and those affecting the motor function and coordination. Such patterns of interaction are extremely indicative of the elucidation of the ubiquitous hypothesis or statement: “My illness is on a mental basis, caused by stress ...”CASE PRESENTATION: We present a 44-year-old patient with untreated schizophrenia for approximately 25 years, associated with advanced acral localised melanoma. Schizophrenia is generally associated with a higher level of dopamine, which is also a key precursor to melanin synthesis. After a careful analysis of all literature on melanoma in patients with 1) treated and untreated schizophrenia, 2) those with untreated and untreated forms of Parkinson’s disease, it would be logical to conclude that the high level of dopamine in the described patient groups is a risk factor for the development of melanoma.CONCLUSIONS: The possible mechanisms for the occurrence of malignant melanoma within the so-called psycho/neuro/endocrine oncology (P.N.E.O.), as well as the effective methods of prevention, are under discussion.

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The vermiform appendix impacts the risk of developing Parkinson’s disease

Science Translational Medicine ◽

10.1126/scitranslmed.aar5280 ◽

2018 ◽

Vol 10 (465) ◽

pp. eaar5280 ◽

Cited By ~ 71

Author(s):

Bryan A. Killinger ◽

Zachary Madaj ◽

Jacek W. Sikora ◽

Nolwen Rey ◽

Alec J. Haas ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Gastrointestinal Tract ◽

Rural Areas ◽

Lower Risk ◽

Lewy Bodies ◽

Vermiform Appendix ◽

Healthy Human ◽

Normal Human ◽

Human Appendix

The pathogenesis of Parkinson’s disease (PD) involves the accumulation of aggregated α-synuclein, which has been suggested to begin in the gastrointestinal tract. Here, we determined the capacity of the appendix to modify PD risk and influence pathogenesis. In two independent epidemiological datasets, involving more than 1.6 million individuals and over 91 million person-years, we observed that removal of the appendix decades before PD onset was associated with a lower risk for PD, particularly for individuals living in rural areas, and delayed the age of PD onset. We also found that the healthy human appendix contained intraneuronal α-synuclein aggregates and an abundance of PD pathology–associated α-synuclein truncation products that are known to accumulate in Lewy bodies, the pathological hallmark of PD. Lysates of human appendix tissue induced the rapid cleavage and oligomerization of full-length recombinant α-synuclein. Together, we propose that the normal human appendix contains pathogenic forms of α-synuclein that affect the risk of developing PD.

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High-level language difficulties in Parkinson's disease

Clinical Linguistics & Phonetics ◽

10.1080/0269920021000055540 ◽

2003 ◽

Vol 17 (1) ◽

pp. 63-80 ◽

Cited By ~ 52

Author(s):

Elvira Berg ◽

Camilla Björnram ◽

Lena Hartelius ◽

Katja Laakso ◽

Bo Johnels

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

High Level Language ◽

Language Difficulties ◽

High Level

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Perspectives on Care for Late-Stage Parkinson’s Disease

Parkinson s Disease ◽

10.1155/2021/9475026 ◽

2021 ◽

Vol 2021 ◽

pp. 1-11

Author(s):

Kristina Rosqvist ◽

Marianne Kylberg ◽

Charlotte Löfqvist ◽

Anette Schrag ◽

Per Odin ◽

...

Keyword(s):

Parkinson’S Disease ◽

Health Care ◽

Parkinson's Disease ◽

Everyday Life ◽

Residential Care ◽

Home Health Care ◽

Late Stage ◽

Informal Caregivers ◽

Home Health ◽

Main Category

In the late stage of Parkinson’s disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients’ and their informal caregivers’ satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n = 11) and informal caregivers (n = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: “We are trying to get by both with and without the formal care” and five subcategories: “Availability of health care is important for managing symptoms and everyday life”; “Dependence on others and scheduled days form everyday life”; “There is a wish to get adequate help when it is needed”; “Mixed feelings on future housing and respite care”; and “Family responsibility and loyalty for a functioning everyday life”. Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.

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