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Michael Okun Indu Subramanian Jonny Acheson

 

Your caregiver or care-partner is the key to your Parkinson's success

We have to recognize that caregiver and care-partner strain is common in Parkinson’s. It affects quality of life and if addressed can help to drive success for a person with Parkinson’s. Here is some recent data on the subject. See also our Facebook Video on your caregiver or care-partner being the key to your Parkinson's success.

  • Person with Parkinson’s non-motor psychological symptoms have a much greater impact on caregiver strain and depression than patient motor symptoms.

  • The Parkinson’s Foundation Quality Improvement Initiatives (NPF-QII) is the first large scale data-driven initiative in Parkinson's disease aimed at identifying variables predicting best care models and outcomes.

  • In the Parkinson’s Foundation study 1773 (71.6%) of caregivers reported at least mild caregiver strain (MCSI < 20)

  • Of those reporting the mild strain , 240 (9.6%) had MCSI = 0; 427 (17.3%) had moderate caregiver strain (MCSI 21–29); and 276 (11.2%) had severe caregiver strain (MCSI ≥ 30).

  • A multiple logistic regression model with stepwise selection showed that in addition to PDQ-39 ≥ 47 (OR and 95% confidence interval = 5.1 (3.2, 8.2), other subject characteristics were associated with high caregiver strain: (model p < 0.001, c = 0.838): Hoehn and Yahr stage >3 (2.0 (1.3, 3.1)), presence of concomitant medications such as antidepressants (2.1 (1.5, 3.1)) and antipsychotics (2.5 (1.5, 4.2)), social worker visits (1.6 (1.2, 2.1)), male gender (2.3 (1.5, 3.5)), and decreased verbal fluency (0.95 (0.92, 0.98)).

  • Even in early stage disease before significant care is required, young spouses (40–55) were found to be at greater risk for negative consequences of the care situation reporting significantly more strain from lack of personal resources, and lower levels of mutuality and rewards of meaning than older (greater than 70) spouses.

  • Young spouses were more likely to be working, caring for children in the home, and in better physical health than older spouses.

References:

Carter JH, Stewart BJ, Lyons KS, Archbold PG. Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression? Mov Disord. 2008 Jul 15;23(9):1211-6. doi: 10.1002/mds.21686. PMID: 18528898.

Carter JH, Lyons KS, Stewart BJ, Archbold PG, Scobee R. Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson's disease. Mov Disord. 2010 Apr 30;25(6):724-30. doi: 10.1002/mds.22888. PMID: 20201024.

Oguh O, Kwasny M, Carter J, Stell B, Simuni T. Caregiver strain in Parkinson's disease: national Parkinson Foundation Quality Initiative study. Parkinsonism Relat Disord. 2013 Nov;19(11):975-9. doi: 10.1016/j.parkreldis.2013.06.015. Epub 2013 Jul 18. PMID: 23871587.


Michael Okun