Experts propose ways to address the rapidly rising number of deaths from Parkinson’s disease and related disorders and improve the end of life care of Parkinson patients in JPD

Sep­tem­ber 10, 2018 – Ams­ter­dam, NL – Deaths asso­cia­ted with Parkinson’s disea­se and rela­ted dis­or­ders increa­sed sub­stan­ti­al­ly bet­ween 2001 and 2014. Parkinson’s disea­se was in fact the most com­mon cau­se of death asso­cia­ted with a neu­ro­lo­gi­cal con­di­ti­on, accord­ing to a report by Public Health Eng­land. Inter­na­tio­nal experts repor­ting in the Jour­nal of Parkinson’s Disea­se eva­lua­te the­se fin­dings and address important impli­ca­ti­ons for future health­ca­re needs.

The bur­den cau­sed by Parkinson’s disea­se has increa­sed alar­min­gly in recent years, taking the pro­por­ti­ons of a true Par­kin­son “pan­de­mic.” Over six and a half mil­li­on indi­vi­du­als aged 20 years and over died in Eng­land bet­ween 2001 and 2014 accord­ing to the recent report by Public Health Eng­land. Of the­se, over 90,000 deaths were asso­cia­ted with a neu­ro­lo­gi­cal con­di­ti­on. Parkinson’s disea­se was the most com­mon indi­vi­du­al neu­ro­lo­gi­cal con­di­ti­on recor­ded on the death cer­ti­fi­ca­tes as the under­ly­ing cau­se of death. Parkinson’s disea­se was the most com­mon cau­se of death over­all and accoun­ted for 31% of deaths asso­cia­ted with a neu­ro­lo­gi­cal con­di­ti­on as the under­ly­ing cau­se, the con­tri­buto­ry cau­se, or both.

Reviewing the report, a team of inter­na­tio­nal experts led by Pro­fes­sor Bas­tia­an R. Blo­em, MD, PhD; Rad­boud Uni­ver­si­ty Medi­cal Cen­ter, Nij­me­gen, The Nether­lands explo­re the deeper rele­van­ce of the num­bers and trends. “The­se sta­tis­tics are important and should be used to inform and gui­de tho­se who make long-term decisi­ons about the prac­ti­ca­li­ties of how Par­kin­son pati­ents are mana­ged by the various health­ca­re sys­tems invol­ved, working tog­e­ther to impro­ve qua­li­ty of care and qua­li­ty of life,” comments Prof. Blo­em.“

The­re are several pos­si­ble explana­ti­ons for the increa­se in mor­ta­li­ty asso­cia­ted with Parkinson’s disea­se. It is cer­tain­ly in kee­ping with other recent reports that point to a striking rise in the inci­dence of new pati­ents with Parkinson’s disea­se in the gene­ral popu­la­ti­on.”

The aut­hors also high­light com­pel­ling data on the place of death, reve­aling that eight out of ten Par­kin­son pati­ents die in hos­pi­tals or care homes. First aut­hor Sir­wan Dar­weesh, MD, MSc, Rad­boud Uni­ver­si­ty Medi­cal Cen­ter, Nij­me­gen, The Nether­lands, and Har­vard T.H. Chan School of Public Health, Bos­ton, MA, USA, empha­si­zes the tre­men­dous impor­t­an­ce of this fin­ding: “Being able to die at home is a core wish of most pati­ents with Parkinson’s disea­se; our cur­rent health­ca­re sys­tem is some­ti­mes not able unab­le to meet this essen­ti­al wish of pati­ents and their fami­lies, par­ti­cu­lar­ly when medi­cal issu­es requi­ring hos­pi­ta­li­za­ti­on occur.”

The aut­hors pro­po­se a num­ber of solu­ti­ons to impro­ve the manage­ment of Par­kin­son pati­ents in the com­mu­ni­ty and rai­se stan­dards of care in care homes and hos­pi­tals:

• A net­work of spe­ci­fi­cal­ly trai­ned health­ca­re pro­fes­sio­nals with spe­ci­fic exper­ti­se in Par­kin­son manage­ment

• A per­so­na­li­zed, col­la­bo­ra­ti­ve plan of care, not only for, but also with pati­ents and their fami­lies

• Per­so­nal case mana­gers for Par­kin­son pati­ents

• Dedi­ca­ted Par­kin­son nur­sing homes

“Parkinson’s disea­se is a mat­ter of serious con­cern for our future genera­ti­ons,” comments Prof. Blo­em. “Future efforts should be focu­sed on pro­vi­ding resour­ces for vul­nera­ble elder­ly Par­kin­son pati­ents, avoi­ding unplan­ned hos­pi­tal admis­si­ons and out-of-home deaths as much as pos­si­ble.”

The Public Health Eng­land report is “Deaths asso­cia­ted with neu­ro­lo­gi­cal con­di­ti­ons in Eng­land 2001 to 2014” (PDF), issued by the Natio­nal Neu­ro­lo­gy Intel­li­gence Net­work, Natio­nal End of Life Care Intel­li­gence Net­work. It inves­ti­ga­tes the num­bers and rates of deaths asso­cia­ted with neu­ro­lo­gi­cal con­di­ti­ons and their recent trends; the demo­gra­phic cha­rac­te­ris­tics of peop­le dying with neu­ro­lo­gi­cal con­di­ti­ons; the under­ly­ing cau­se of death and asso­cia­ti­on with the broad disea­se groups; and place of death.


Full open access stu­dy: “Par­kin­son Mat­ters,” by Sir­wan K.L. Dar­weesh, MD, MSc, Karen G. Rapha­el, PhD, Patrik Brun­din, MD, PhD, Helen Mat­thews, Richard K. Wyse, MD, Hon­glei Chen, MD, PhD, and Bas­tia­an R. Blo­em, MD, PhD (DOI 10.3233/JPD-181374), published in the Jour­nal of Parkinson’s Disea­se, Volu­me 8, Issue 4 (Octo­ber 2018) by IOS Press and avail­ab­le open access at: Bas Blo­em was sup­por­ted by a rese­arch grant from the Par­kin­son Foun­da­ti­on.


Full text of this arti­cle is avail­ab­le to creden­tia­led jour­na­lists upon request; con­tact Dia­na Mur­ray, IOS Press (+1 718 640‑5678; Jour­na­lists who wish to inter­view the aut­hors should con­tact Prof. Bas Blo­em ( or Roos de Gouw at (

About the Jour­nal of Parkinson’s Disea­se

Laun­ched in 2011, the Jour­nal of Parkinson’s Disea­se (JPD) is dedi­ca­ted to pro­vi­ding an open forum for ori­gi­nal rese­arch in basic sci­ence, trans­la­tio­nal rese­arch and cli­ni­cal medi­ci­ne that will expe­di­te our fun­da­men­tal under­stan­ding and impro­ve tre­at­ment of Parkinson’s disea­se. The jour­nal is inter­na­tio­nal and mul­ti­di­sci­pli­na­ry and aims to pro­mo­te pro­gress in the epi­de­mio­lo­gy, etio­lo­gy, gene­tics, mole­cu­lar cor­re­la­tes, patho­ge­ne­sis, phar­ma­co­lo­gy, psy­cho­lo­gy, dia­gno­sis and tre­at­ment of Parkinson’s disea­se. JPD publishes rese­arch reports, reviews, short com­mu­ni­ca­ti­ons, and let­ters-to-the-edi­tor and offers very rapid publi­ca­ti­on and an afford­a­ble open access opti­on.

About IOS Press

IOS Press is head­quar­te­red in Ams­ter­dam with satel­li­te offices in the USA, Ger­ma­ny, India and Chi­na and ser­ves the infor­ma­ti­on needs of sci­en­ti­fic and medi­cal com­mu­nities world­wi­de. IOS Press now publishes over 100 inter­na­tio­nal jour­nals and about 75 book tit­les each year on sub­jec­ts ran­ging from com­pu­ter sci­en­ces and mathe­ma­tics to medi­ci­ne and the natu­ral sci­en­ces.