IN-HOME-PD Caregivers: The effects of a combined home visit and peer mentoring intervention for caregivers of homebound individuals with advanced Parkinson's disease


      • Family caregivers of those with advanced Parkinson's Disease experience high strain.
      • Home visits and peer mentoring in Parkinson's caregivers mitigated worsening strain.
      • Caregiver peer mentoring had high retention, fidelity, utility, and satisfaction.



      Family caregivers of people with advanced Parkinson's Disease (PD) are at high risk of caregiver strain, which independently predicts adverse patient outcomes. We tested the effects of one year of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) with 16 weeks of peer mentoring on caregiver strain compared with usual care.


      We enrolled homebound people with advanced PD (PWPD) and their primary caregiver as IN-HOME-PD dyads. We trained experienced PD family caregivers as peer mentors. Dyads received four structured home visits focused on advanced symptom management, home safety, medications, and psychosocial needs. Starting at approximately four months, caregivers spoke weekly with a peer mentor for 16 weeks. We compared one-year change in caregiver strain (MCSI, range 0–72) with historical controls, analyzed intervention acceptability, and measured change in anxiety, depression, and self-efficacy.


      Longitudinally, IN-HOME-PD caregiver strain was unchanged (n = 51, 23.34 (SD 9.43) vs. 24.32 (9.72), p = 0.51) while that of controls worsened slightly (n = 154, 16.45 (10.33) vs. 17.97 (10.88), p = 0.01). Retention in peer mentoring was 88.2%. Both mentors and mentees rated 100% of mentoring calls useful, with mean satisfaction of 91/100 and 90/100, respectively. There were no clinically significant improvements in anxiety, depression, or self-efficacy.


      Interdisciplinary telehealth-enhanced home visits combined with peer mentoring mitigated the worsening strain observed in caregivers of less advanced individuals. Mentoring was met with high satisfaction. Future caregiver-led peer mentoring interventions are warranted given the growing, unmet needs of PD family caregivers.

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        • Dorsey E.R.
        • George B.P.
        • Leff B.
        • Willis A.W.
        The coming crisis: obtaining care for the growing burden of neurodegenerative conditions.
        Neurology. 2013; 80: 1989-1996
        • Yang W.
        • Hamilton J.L.
        • Kopil C.
        • et al.
        Current and projected future economic burden of Parkinson's disease in the U.S.
        NPJ Park Dis. 2020; 6: 15
        • Martinez-Martin P.
        • Macaulay D.
        • Jalundhwala Y.J.
        • et al.
        The long-term direct and indirect economic burden among Parkinson's disease caregivers in the United States.
        Mov Disord Off J Mov Disord Soc. 2019; 34: 236-245
        • Bhimani R.
        Understanding the burden on caregivers of people with Parkinson's: a scoping review of the literature.
        Rehabil Res Pract. 2014; 2014718527
        • Oguh O.
        • Kwasny M.
        • Carter J.
        • Stell B.
        • Simuni T.
        Caregiver strain in Parkinson's disease: national Parkinson Foundation Quality Initiative study.
        Park. Relat. Disord. 2013; 19: 975-979
        • Hely M.A.
        • Morris J.G.
        • Reid W.G.
        • Trafficante R.
        Sydney Multicenter Study of Parkinson's disease: non-L-dopa-responsive problems dominate at 15 years.
        Mov. Disord. 2005; 20: 190-199
        • Barone P.
        • Antonini A.
        • Colosimo C.
        • et al.
        The PRIAMO study: a multicenter assessment of nonmotor symptoms and their impact on quality of life in Parkinson's disease.
        Mov Disord Off J Mov Disord Soc. 2009; 24: 1641-1649
        • Mueller C.
        • Perera G.
        • Rajkumar A.P.
        • et al.
        Hospitalization in people with dementia with Lewy bodies: frequency, duration, and cost implications.
        Alzheimers Dement Amst Neth. 2018; 10: 143-152
        • Svendsboe E.
        • Terum T.
        • Testad I.
        • et al.
        Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease.
        Int. J. Geriatr. Psychiatr. 2016; 31: 1075-1083
        • Roland K.P.
        • Chappell N.L.
        Caregiver experiences across three neurodegenerative diseases: Alzheimer's, Parkinson's, and Parkinson's with dementia.
        J. Aging Health. 2019; 31: 256-279
        • Murman D.L.
        • Kuo S.B.
        • Powell M.C.
        • Colenda C.C.
        The impact of parkinsonism on costs of care in patients with AD and dementia with Lewy bodies.
        Neurology. 2003; 61: 944-949
        • Goetz C.G.
        • Stebbins G.T.
        Risk factors for nursing home placement in advanced Parkinson's disease.
        Neurology. 1993; 43: 2227-2229
        • Abendroth M.
        • Lutz B.J.
        • Young M.E.
        Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study.
        Int. J. Nurs. Stud. 2012; 49: 445-454
        • Aarsland D.
        • Larsen J.P.
        • Tandberg E.
        • Laake K.
        Predictors of nursing home placement in Parkinson's disease: a population-based, prospective study.
        J. Am. Geriatr. Soc. 2000; 48: 938-942
        • Kalampokini S.
        • Hommel A.L.A.J.
        • Lorenzl S.
        • et al.
        Caregiver burden in late-stage parkinsonism and its associations.
        J. Geriatr. Psychiatr. Neurol. 2022; 35: 110-120
        • Hulshoff M.J.
        • Book E.
        • Dahodwala N.
        • Tanner C.M.
        • Robertson C.
        • Marras C.
        Current knowledge on the evolution of care partner burden, needs, and coping in Parkinson's disease.
        Mov Disord Clin Pract. 2021; 8: 510-520
        • Butler M.
        • Gaugler J.E.
        • Talley K.M.C.
        • et al.
        Care Interventions for People Living with Dementia and Their Caregivers.
        Agency for Healthcare Research and Quality (AHRQ), 2020
        • Fleisher J.
        • Barbosa W.
        • Sweeney M.M.
        • et al.
        Interdisciplinary home visits for individuals with advanced Parkinson's disease and related disorders.
        J. Am. Geriatr. Soc. 2018; 66: 1226-1232
        • Fleisher J.E.
        • Sweeney M.M.
        • Oyler S.
        • et al.
        Disease severity and quality of life in homebound people with advanced Parkinson disease: a pilot study.
        Neurol Clin Pract. 2020; 10: 277-286
      1. Pub 100-02 Medicare benefit policy: clarification of the confined to the home definition in chapter 15, covered medical and other health services, of the Medicare benefit policy manual.
        • Ornstein K.A.
        • Garrido M.M.
        • Bollens-Lund E.
        • et al.
        Estimation of the incident homebound population in the US among older Medicare beneficiaries, 2012 to 2018.
        JAMA Intern. Med. 2020; 180: 1022-1025
        • Xiang X.
        • Chen J.
        • Kim M.
        Trajectories of homebound status in Medicare beneficiaries aged 65 and older.
        Gerontol. 2020; 60: 101-111
        • Charlesworth G.
        • Burnell K.
        • Crellin N.
        • et al.
        Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial.
        J. Neurol. Neurosurg. Psychiatry. 2016; 87: 1218-1228
        • Charlesworth G.
        • Sinclair J.B.
        • Brooks A.
        • Sullivan T.
        • Ahmad S.
        • Poland F.
        The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia.
        Health Soc. Care Community. 2017; 25: 548-558
        • Greenwood N.
        • Habibi R.
        Carer mentoring: a mixed methods investigation of a carer mentoring service.
        Int. J. Nurs. Stud. 2014; 51: 359-369
        • Walshe C.
        • Roberts D.
        • Calman L.
        • et al.
        Peer mentors for people with advanced cancer: lessons learnt from recruiting and training peer mentors for a feasibility randomized controlled trial.
        J Cancer Educ Off J Am Assoc Cancer Educ. Published online January. 2020; 28
        • Zwaiman A.
        • da Luz L.T.
        • Perrier L.
        • et al.
        The involvement of trauma survivors in hospital-based injury prevention, violence intervention and peer support programs: a scoping review.
        Injury. 2022; 53: 2704-2716
        • Perry E.
        • Swartz J.
        • Kelly G.
        • Brown S.L.
        • Swartz R.D.
        Palliative care in chronic kidney disease: peer mentoring program personalizes advance directives discussions.
        Nephrol. News Issues. 2003; 17: 28-31
        • Stevens Z.
        • Barlow C.
        • Iliffe S.
        Promoting physical activity among older people in primary care using peer mentors.
        Prim. Health Care Res. Dev. 2015; 16: 201-206
        • McKenzie G.
        • Shields N.
        • Willis C.
        Finding what works for me” - a qualitative study of factors influencing community gym participation for young adults with cerebral palsy.
        Disabil Rehabil. Published online June. 2022; 12: 1-8
        • Husted Nielsen I.
        • Piil K.
        • Tolver A.
        • Grønbæk K.
        • Kjeldsen L.
        • Jarden M.
        Family caregiver ambassador support for caregivers of patients with newly diagnosed hematological cancer: a feasibility study.
        Support Care Cancer Off J Multinatl Assoc Support Care Cancer. 2022; 30: 6923-6935
        • Geerlings A.D.
        • Meinders M.J.
        • Bloem B.R.
        • van der Marck M.A.
        Using former carers' expertise in peer support for carers of people with Parkinson's Disease.
        NPJ Park Dis. 2022; 8: 133
        • Fleisher J.E.
        • Hess S.
        • Sennott B.J.
        • et al.
        Longitudinal, interdisciplinary home visits versus usual care for homebound people with advanced Parkinson disease: protocol for a controlled trial.
        JMIR Res Protoc. 2021; 10e31690
        • Fleisher J.E.
        • Hess S.P.
        • Klostermann E.C.
        • et al.
        IN-HOME-PD: the effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson's disease.
        Park. Relat. Disord. 2022; 102: 68-76
        • Fleisher J.
        • Akram F.
        • Lee J.
        • et al.
        Share the care peer mentoring program for informal caregivers of homebound individuals with advanced Parkinson's disease: study design, implementation, and baseline participant characteristics.
        JMIR Res Protoc. April 28, 2022; (Published online)
        • Guo L.
        • Jiang Y.
        • Yatsuya H.
        • Yoshida Y.
        • Sakamoto J.
        Group education with personal rehabilitation for idiopathic Parkinson's disease.
        Can. J. Neurol. Sci. 2009; 36
        • Okun M.S.
        • Siderowf A.
        • Nutt J.G.
        • et al.
        Piloting the NPF data-driven quality improvement initiative.
        Park. Relat. Disord. 2010; 16: 517-521
        • Oguh O.
        • Kwasny M.
        • Carter J.
        • Stell B.
        • Simuni T.
        Caregiver strain in Parkinson's disease: national Parkinson Foundation Quality Initiative study.
        Park. Relat. Disord. 2013; 19: 975-979
        • Stull D.E.
        The multidimensional caregiver strain index (MCSI): its measurement and structure.
        J. Clin. Geropsychol. 1996; 2: 175-196
        • McMurtry S.
        • Hudson W.
        The client satisfaction inventory: results of an initial validation study.
        Res. Soc. Work. Pract. 2000; 10: 644-663
        • Zigmond A.S.
        • Snaith R.P.
        The hospital anxiety and depression scale.
        Acta Psychiatr. Scand. 1983; 67: 361-370
        • Fortinsky R.H.
        • Kercher K.
        • Burant C.J.
        Measurement and correlates of family caregiver self-efficacy for managing dementia.
        Aging Ment. Health. 2002; 6: 153-160
        • Schmotz C.
        • Richinger C.
        • Lorenzl S.
        High burden and depression among late-stage idiopathic Parkinson disease and progressive supranuclear palsy caregivers.
        J. Geriatr. Psychiatr. Neurol. 2017; 30: 267-272
        • Peters M.
        • Fitzpatrick R.
        • Doll H.
        • Playford D.
        • Jenkinson C.
        Does self-reported well-being of patients with Parkinson's disease influence caregiver strain and quality of life?.
        Park. Relat. Disord. 2011; 17: 348-352
        • Vatter S.
        • McDonald K.R.
        • Stanmore E.
        • Clare L.
        • Leroi I.
        Multidimensional care burden in Parkinson-related dementia.
        J. Geriatr. Psychiatr. Neurol. 2018; 31: 319-328
        • Dahodwala N.
        • Shah K.
        • He Y.
        • et al.
        Sex disparities in access to caregiving in Parkinson disease.
        Neurology. 2018; 90: e48-e54
        • Lyons K.S.
        • Stewart B.J.
        • Archbold P.G.
        • Carter J.H.
        Optimism, pessimism, mutuality, and gender: predicting 10-year role strain in Parkinson's disease spouses.
        Gerontol. 2009; 49: 378-387
        • Pearlin L.I.
        • Mullan J.T.
        • Semple S.J.
        • Skaff M.M.
        Caregiving and the stress process: an overview of concepts and their measures.
        Gerontol. 1990; 30: 583-594
        • Mausbach B.T.
        • Patterson T.L.
        • Von Känel R.
        • et al.
        The attenuating effect of personal mastery on the relations between stress and Alzheimer caregiver health: a five-year longitudinal analysis.
        Aging Ment. Health. 2007; 11: 637-644
        • Chan E.Y.
        • Glass G.
        • Chua K.C.
        • Ali N.
        • Lim W.S.
        Relationship between mastery and caregiving competence in protecting against burden, anxiety and depression among caregivers of frail older adults.
        J. Nutr. Health Aging. 2018; 22: 1238-1245
        • Tanji H.
        • Koyama S.
        • Wada M.
        • et al.
        Comparison of caregiver strain in Parkinson's disease between Yamagata, Japan, and Maryland, the United States.
        Park. Relat. Disord. 2013; 19: 628-633
        • Aarsland D.
        • Marsh L.
        • Schrag A.
        Neuropsychiatric symptoms in Parkinson's disease.
        Mov. Disord. 2009; 24: 2175-2186
        • Schulz R.
        • Beach S.R.
        Caregiving as a risk factor for mortality: the caregiver health effects study.
        JAMA. 1999; 282: 2215-2219
        • Connor K.I.
        • McNeese-Smith D.K.
        • Vickrey B.G.
        • et al.
        Determining care management activities associated with mastery and relationship strain for dementia caregivers.
        J. Am. Geriatr. Soc. 2008; 56: 891-897
        • Carter G.
        • Monaghan C.
        • Santin O.
        What is known from the existing literature about peer support interventions for carers of individuals living with dementia: a scoping review.
        Health Soc. Care Community. 2020; 28: 1134-1151
        • Banbury A.
        • Parkinson L.
        • Gordon S.
        • Wood D.
        Implementing a peer-support programme by group videoconferencing for isolated carers of people with dementia.
        J. Telemed. Telecare. 2019; 25: 572-577
        • Pillemer K.
        • Suitor J.J.
        Peer support for Alzheimer's caregivers: is it enough to make a difference?.
        Res. Aging. 2002; 24: 171-192
        • Ghahramani N.
        • Chinchilli V.M.
        • Kraschnewski J.L.
        • Lengerich E.J.
        • Sciamanna C.N.
        Improving caregiver burden by a peer-led mentoring program for caregivers of patients with chronic kidney disease: randomized controlled trial.
        J Patient Exp. 2022; 9237437352210763
        • Bennett P.N.
        • St Clair Russell J.
        • Atwal J.
        • Brown L.
        • Schiller B.
        Patient-to-patient peer mentor support in dialysis: improving the patient experience.
        Semin. Dial. 2018; 31: 455-461
        • Stewart M.
        • Barnfather A.
        • Neufeld A.
        • Warren S.
        • Letourneau N.
        • Liu L.
        Accessible support for family caregivers of seniors with chronic conditions: from isolation to inclusion.
        Can J Aging Rev Can Vieil. 2006; 25: 179-192
        • Brodaty H.
        • Thomson C.
        • Thompson C.
        • Fine M.
        Why caregivers of people with dementia and memory loss don't use services.
        Int. J. Geriatr. Psychiatr. 2005; 20: 537-546
        • Nwabuobi L.
        • Barbosa W.
        • Sweeney M.
        • et al.
        Sex-related differences in homebound advanced Parkinson's disease patients.
        Clin. Interv. Aging. 2019; 14: 1371-1377
        • Adrissi J.
        • Fleisher J.
        Moving the dial toward equity in Parkinson's disease clinical research: a review of current literature and future directions in diversifying PD clinical trial participation.
        Curr. Neurol. Neurosci. Rep. 2022; 22: 475-483
        • Cooper C.
        • Cenko B.
        • Dow B.
        • Rapaport P.
        A systematic review evaluating the impact of paid home carer training, supervision, and other interventions on the health and well-being of older home care clients.
        Int. Psychogeriatr. 2017; 29: 595-604