Objective: To analyze and improve institutional long-term care (LTC) structures for patients with advanced PD and AD by identifying modifiable determinants of care integration, QoL, and caregiver burden in a cross-national study.

Background: Advanced PD and AD are characterized by progressive motor and/or cognitive as well as neuropsychiatric impairment requiring high-intensity, multidisciplinary care. In late disease stages, many patients need transition into institutional LTC [1,2,3]. Calls for integrated, person-centered care, institutions often show fragmentation across neurology, nursing, rehabilitation, and social services [4,5]. System-level determinants influencing QoL, care coordination, and caregiver strain remain insufficiently characterized [6,7].

Method: OPTICARE is a 36-month convergent mixed-methods study across five countries. Approximately 500 patient–caregiver dyads in institutional LTC will undergo standardized quantitative assessment. Semi-structured interviews (n≈150–180) with patients, caregivers, and healthcare professionals, alongside structured ethnographic observations in 5–10 institutions, will examine interdisciplinary collaboration, transition processes, and workflow dynamics. Stakeholder co-design workshops will translate findings into practice-oriented improvement models. Quantitative and qualitative data will be integrated through cross-case synthesis.

Results: The study will generate a systematic cross-national characterization of institutional long-term care structures for advanced PD and AD. Specifically, OPTICARE will identify (1) structural discontinuities between neurology and institutional care, (2) institutional and workforce-related determinants linked to perceived care integration, QoL, and caregiver burden, and (3) cross-national variation in organizational and governance factors shaping late-stage care.

Conclusion: OPTICARE will provide empirically grounded insights into how institutional structures, interdisciplinary collaboration, and governance conditions shape care experiences in advanced neurodegenerative disease. By integrating clinical, organizational, and stakeholder perspectives, the study aims to inform movement disorder and dementia care specialists about structurally modifiable determinants of integrated long-term care, supporting evidence-informed system improvement in late-stage PD and AD.

References: [1] Armstrong MJ, Okun MS. Diagnosis and Treatment of Parkinson Disease: A Review. JAMA. 2020;323(6):548–560. doi:10.1001/jama.2019.22360
[2] Foltynie T, Bruno V, Fox S, Kühn AA, Lindop F, Lees AJ. Medical, surgical, and physical treatments for Parkinson’s disease. Lancet. 2024 Jan 20;403(10423):305-324. doi: 10.1016/S0140-6736(23)01429-0. PMID: 38245250.
[3] Safiri S, Ghaffari Jolfayi A, Fazlollahi A, Morsali S, Sarkesh A, Daei Sorkhabi A, Golabi B, Aletaha R, Motlagh Asghari K, Hamidi S, Mousavi SE, Jamalkhani S, Karamzad N, Shamekh A, Mohammadinasab R, Sullman MJM, Şahin F, Kolahi AA. Alzheimer’s disease: a comprehensive review of epidemiology, risk factors, symptoms diagnosis, management, caregiving, advanced treatments and associated challenges. Front Med (Lausanne). 2024 Dec 16;11:1474043. doi: 10.3389/fmed.2024.1474043. PMID: 39736972; PMCID: PMC11682909.
[4] O’Neal MA, Zecavati N, Yu M, Spain R, Friedenberg SM, El Husseini N, Torres-Russotto DR, Feliciano B, Spears R, Baca C. Effects of Fragmentation and the Case for Greater Cohesion in Neurologic Care Delivery. Neurology. 2022 Jan 24;98(4):146-153. doi: 10.1212/WNL.0000000000013079. PMID: 34795048.
[5] Bartolomeu Pires S, Kunkel D, Kipps C, Goodwin N, Portillo MC. Person-centred integrated care for people living with Parkinson’s, Huntington’s and Multiple Sclerosis: A systematic review. Health Expect. 2024 Feb;27(1):e13948. doi: 10.1111/hex.13948. PMID: 39102669; PMCID: PMC10768870.
[6] Zarzycki M, Vilchinsky N, Bei E, Ferraris G, Seddon D, Morrison V. Cross-country variations in the caregiver role: evidence from the ENTWINE-iCohort study. BMC Public Health. 2024 Mar 26;24(1):898. doi: 10.1186/s12889-024-18302-6. PMID: 38532418; PMCID: PMC10967140.
[7] Calvó-Perxas L, Vilalta-Franch J, Litwin H, Turró-Garriga O, Mira P, Garre-Olmo J. What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries. PLoS One. 2018 Mar 8;13(3):e0194232. doi: 10.1371/journal.pone.0194232. PMID: 29518147; PMCID: PMC5843287.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/optimizing-institutional-long-term-care-in-advanced-parkinsons-and-other-neurodegenerative-disease-the-opticare-study/