Young Stroke: Resources for Patients, Their Families, and Caregivers for Long-Term Community Living

Abstract

Approximately 1 in 10 strokes occurs in adults younger than 50 years of age (young stroke).1Ferro J.M. Massaro A.R. Mas J.L. Aetiological diagnosis of ischaemic stroke in young adults.Lancet Neurol. 2010; 9: 1085-1096Abstract Full Text Full Text PDF PubMed Scopus (168) Google Scholar In the United States, hospitalizations resulting from to ischemic stroke (most common type of stroke) among young adults are increasing.2Virani S.S. Alonso A. Benjamin E.J. et al.Heart disease and stroke statistics–2020 update: a report from the American Heart Association.Circulation. 2020; 141: e139-596Crossref PubMed Scopus (2074) Google Scholar,3Ekker M.S. Boot E.M. Singhal A.B. Tan K.S. Debette S. Tuladhar A.M. de Leeuw F.E. Epidemiology, aetiology, and management of ischaemic stroke in young adults.Lancet Neurol. 2018; 17: 790-801Abstract Full Text Full Text PDF PubMed Scopus (104) Google Scholar Although having a stroke at any age can result in lifelong physical, visual, emotional, and thinking changes that significantly affect the lives of the survivors, their families, and caregivers, young stroke survivors experience additional challenges. Young stroke survivors often still have to take care of their families, work to ensure their financial security, and be active members of their social communities. These life demands put added pressure on young stroke survivors to return to their prestroke roles and can affect quality of life. The good news is that younger people have a greater capacity to recover and tend to recover faster. A variety of treatment options are available to facilitate the recovery process. This information page provides useful information to help you understand common needs and experiences of young stroke survivors and some of the resources available to address them. Many changes can occur after a stroke, including but not limited to:•Weakness and decreased movement in one side of your body•Difficulty walking because of changes in balance and gait•Problems with eyesight such as double vision, neglect, and partial or complete vision loss•Difficulties with thinking and memory•Speech and language problems•Mood changes such as depression, anxiety, or lack of interest in things•Sleep problems•Fatigue•Changes in touch and sensation•Incontinence owing to bowel or bladder weakness•Changes in sexual behavior and intimacy All of these changes might significantly limit one’s ability to perform daily activities and participate fully in complex tasks such as driving and working. These limitations make it difficult for stroke survivors to “return to normal routine” in the home and community. Starting rehabilitation early can help young stroke survivors meet their goals. Early rehabilitation interventions in outpatient settings or delivered at home focus on skills such as walking or using a wheelchair, using arms and hands, speaking, and self-care skills such as dressing, showering, and managing medications. Every survivor recovers at their own pace. Some show a lot of improvement in a short amount of time, whereas others may have slower improvement or not improve much at all. Even after early rehabilitation, one may still some experience long-term effects from the stroke, which can make it difficult to do all of one’s usual activities, including going back to full- or part-time work. This can be difficult financially and can affect one’s relationships, emotional well-being, and quality of life. Yes, it is possible to have multiple stroke-related challenges because these challenges often overlap and interact. For instance, an individual with depression after stroke may not be able to return to their office job or driving. Not being able to work or drive may make the depression worse and increase life stressors. However, there are several resources to help young stroke survivors return to previous work or find new meaningful work or volunteer opportunities,4Scott S.L. Burns S.P. Schwartz J. Kovic M. Returning to work after mild stroke.Arch Phys Med Rehabil. 2019; 100: 379-383Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar,5Burns S.P. Schwartz J.K. Scott S.L. Devos H. Kovic M. Hong I. Akinwuntan A. Interdisciplinary approaches to facilitate return to driving and return to work in mild stroke: a position paper.Arch Phys Med Rehabil. 2018; 99: 2378-2388Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar as well as to manage mental health issues.6Terrill A.L. Schwartz J.K. Belagaje S. Understanding mental health needs after mild stroke.Arch Phys Med Rehabil. 2019; 100: 1003-1008Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar Information is also available on returning to driving after stroke.5Burns S.P. Schwartz J.K. Scott S.L. Devos H. Kovic M. Hong I. Akinwuntan A. Interdisciplinary approaches to facilitate return to driving and return to work in mild stroke: a position paper.Arch Phys Med Rehabil. 2018; 99: 2378-2388Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar,7Devos H. Hong I. Frias A. Burns S. Schwartz J. Akinwuntan A. Driving after mild stroke.Arch Phys Med Rehabil. 2018; 99: 1935-1937Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar Long-lasting deficits are common after stroke. Having a stroke is a major life event, and survivors should not be ashamed to seek help and support. The young stroke survivor, family members, and caregivers can always talk to a health care provider and make him or her aware of any health concerns or challenges currently being experienced. Although having a stroke at a young age can be overwhelming, there are a lot of treatment options and resources available to help with both short- and long-term recovery.4Scott S.L. Burns S.P. Schwartz J. Kovic M. Returning to work after mild stroke.Arch Phys Med Rehabil. 2019; 100: 379-383Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar, 5Burns S.P. Schwartz J.K. Scott S.L. Devos H. Kovic M. Hong I. Akinwuntan A. Interdisciplinary approaches to facilitate return to driving and return to work in mild stroke: a position paper.Arch Phys Med Rehabil. 2018; 99: 2378-2388Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar, 6Terrill A.L. Schwartz J.K. Belagaje S. Understanding mental health needs after mild stroke.Arch Phys Med Rehabil. 2019; 100: 1003-1008Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar, 7Devos H. Hong I. Frias A. Burns S. Schwartz J. Akinwuntan A. Driving after mild stroke.Arch Phys Med Rehabil. 2018; 99: 1935-1937Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar, 8Menon B. Salini P. Habeeba K. Conjeevaram J. Munisusmitha K. Female caregivers and stroke severity determines caregiver stress in stroke patients.Ann Indian Acad Neurol. 2017; 20: 418-424Crossref PubMed Scopus (16) Google Scholar, 9Hu X. Heyn P.C. Schwartz J. Roberts P. What is mild stroke?.Arch Phys Med Rehabil. 2017; 98: 2347-2349Abstract Full Text Full Text PDF PubMed Scopus (5) Google Scholar, 10Hill V.A. Formative evaluation of the healthy eating and lifestyle after stroke intervention.Arch Phys Med Rehabil. 2015; 96: e83Abstract Full Text Full Text PDF Google Scholar One should talk to a health care provider about what treatments are best given one’s symptoms, goals, and lifestyle. Table 1 provides information about the types of rehabilitation often needed among young stroke survivors.Table 1What rehabilitation services are available to help?Rehabilitation ServicesDescription and Information on Additional ResourcesVocational rehabilitationThe focus of vocational rehabilitation is on determining what type of work the stroke survivor can do, setting realistic goals, and determining the number of hours one can work safely. In addition, vocational rehabilitation can provide training for an alternative line of work if the individual is unable to return to their previous work as a result of their stroke.•https://www.stroke.org/en/life-after-stroke/recovery/return-to-work•https://www.archives-pmr.org/article/S0003-99931830316-2/fulltextTherapeutic recreationA therapeutic recreation specialist uses games, sports, and other activities to improve mental and physical abilities to participate in and enjoy life activities.•https://www.stroke.org/en/about-stroke/effects-of-stroke/physical-effects-of-stroke/healing/recreational-therapyDriving rehabilitationDriving rehabilitation addresses driving and provides an opportunity for stroke survivors to train and regain confidence in driving. Note that specific visual and medical requirements for returning to driving after a stroke vary by country and by state in the United States.•https://www.aded.net/•https://www.stroke.org/en/life-after-stroke/recovery/daily-living/driving-after-stroke•https://www.archives-pmr.org/article/S0003-99931830313-7/fulltextPeer support groupsPeer support groups bring stroke survivors together, can help with information sharing and emotional support, and can be a source of strength and inspiration. Young stroke survivor groups can be found in the local community or online (eg, Young Stroke), and on social media sites such as Facebook.•https://supportnetwork.heart.org/?utm_source=ASAsite&utm_medium=owned&utm_campaign=familycaregivers&utm_content=evergreen•https://youngstroke.com/General resources•https://www.strokengine.ca/en/•https://www.cdc.gov/stroke/materials_for_patients.htm•http://www.strokecenter.org/patients/•https://www.stroke.org/ Open table in a new tab Following up with a health care provider after leaving the hospital is important. This can be a primary care physician, nurse practitioner, physiatrist, or neurologist (table 2). Maintaining regular contact with a health care provider will help to ensure that the stroke survivor receives proper medications to prevent recurrent strokes and can help to identify new or address lingering poststroke concerns. A health care provider can make referrals to proper resources as needed.Table 2Which rehabilitation specialists are available to help address challenges of young stroke?Rehabilitation DisciplineDescription and Information on Additional ResourcesPhysiatryA physiatrist is a rehabilitation physician who evaluates and treats stroke and is an expert in developing patient-centered treatment plans.•https://www.aapmr.org/about-physiatry/about-physical-medicine-rehabilitation/what-is-physiatryPhysical therapyA neurophysical therapist evaluates and treats stroke survivors through use of exercises, modalities, and education to improve strength, balance, walking, coordination, and ability to move and get from one place to another.•https://www.choosept.com/symptomsconditionsdetail/physical-therapy-guide-to-strokeOccupational therapyA neuro-occupational therapist helps improve function in important everyday tasks by addressing difficulties related to thinking and organization, hand and arm strength and coordination, and vision. Occupational therapists can also help adapt the home and work environment to support participation in the activities that are important to the stroke survivor.•https://www.aota.org/∼/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/Facts/Stroke-Rehab-fact-sheet.pdfSpeech language pathologyA speech language pathologist helps to improve the ability to communicate and think. A speech language pathologist can also help if the stroke survivor is having difficulty swallowing.•https://www.prosthetics.va.gov/factsheet/SLP-FactSheet.pdf•https://www.youtube.com/watch?v=eoBPPtCi2mEClinical neuropsychologyA neuropsychologist uses a series of tests to evaluate and treat various aspects of cognition, thinking, memory, and behavior, as well as mental health issues such as depression. A neuropsychologist may also be involved in the treatment of the problem by providing counselling and guidance on accommodations for a possible structured return to work and assist with coming up with work-related accommodations as needed to address disability issues.•https://theaacn.org/adult-neuropsychology/Rehabilitation psychologyA rehabilitation psychologist addresses the emotional aspects of coping with and adjusting to the challenges of having a stroke. They can help with changes in mood, sleep problems, and pain management.•https://www.abpp.org/Applicant-Information/Specialty-Boards/Rehabilitation-Psychology.aspxMusic therapyA music therapist uses music-based interventions to address individualized goals. They can help with ability to talk and move at the same time.•https://www.stroke.org/en/about-stroke/effects-of-stroke/physical-effects-of-stroke/healing/healing-through-musicAssistive technology professionalAn assistive technology professional can help with the selection and fitting of adaptive equipment, including wheelchairs. This professional can be an occupational therapist, physical therapist, or another rehabilitation professional who has completed extra training and certification as an “assistive technology professional.”•https://www.archives-pmr.org/article/S0003-99931830316-2/fulltext/ Open table in a new tab One should ask his or her health care provider what caused the stroke (if a cause can be determined), so the individual can take action to reduce the risk of having another stroke. Steps might include:•Exercising regularly•Stopping smoking•Taking medications as prescribed•Monitoring and controlling blood pressure•Avoiding excessive alcohol consumption•Reducing cholesterol•Eating healthy10Hill V.A. Formative evaluation of the healthy eating and lifestyle after stroke intervention.Arch Phys Med Rehabil. 2015; 96: e83Abstract Full Text Full Text PDF Google Scholar Family members and caregivers may also experience challenges in their daily life, such as money and finances, role loss or shift (eg, spouse or child is now primary caregiver), intimacy, driving, and return to work. Some helpful resources to cope with driving5Burns S.P. Schwartz J.K. Scott S.L. Devos H. Kovic M. Hong I. Akinwuntan A. Interdisciplinary approaches to facilitate return to driving and return to work in mild stroke: a position paper.Arch Phys Med Rehabil. 2018; 99: 2378-2388Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar,7Devos H. Hong I. Frias A. Burns S. Schwartz J. Akinwuntan A. Driving after mild stroke.Arch Phys Med Rehabil. 2018; 99: 1935-1937Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar and return to work4Scott S.L. Burns S.P. Schwartz J. Kovic M. Returning to work after mild stroke.Arch Phys Med Rehabil. 2019; 100: 379-383Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar,5Burns S.P. Schwartz J.K. Scott S.L. Devos H. Kovic M. Hong I. Akinwuntan A. Interdisciplinary approaches to facilitate return to driving and return to work in mild stroke: a position paper.Arch Phys Med Rehabil. 2018; 99: 2378-2388Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar are available. Many young stroke survivors experience changes in their ability to fulfill their roles and responsibilities. Changes in work, household chores, and parenting can all take a toll on family relationships. Changes in sexual behavior and intimacy may also occur as a result of physical limitations, depression, fear, medications, and other reasons. All of these changes can take a toll on caregivers, and 50% to 60% of caregivers will experience some burnout.11What is caregiver burnout?.https://www.stroke.org/-/media/data-import/downloadables/5/4/2/pe-abh-what-is-caregiver-burnout-ucm_300657.pdf?la=enGoogle Scholar Women and people providing care to stroke survivors with more complications (eg, incontinence) are at greater risk of burnout. Caregiver burnout is common and nothing to be ashamed of. It can simply be a sign that a caregiver needs more help than they are receiving. If a caregiver is experiencing signs of burnout (eg, feeling drained, unable to cope, experiencing headaches), he or she should let their health care provider or the stroke survivor’s health care team know. Addressing burnout early protects well-being of both the caregiver and the stroke survivor. Some signs of caregiver burnout include difficulty falling or staying asleep, changes in appetite, depression, and inappropriate treatment of the young stroke survivor.11What is caregiver burnout?.https://www.stroke.org/-/media/data-import/downloadables/5/4/2/pe-abh-what-is-caregiver-burnout-ucm_300657.pdf?la=enGoogle Scholar Some strategies to reduce caregiver burnout include taking things one day at a time, choosing good nutrition, and seeking additional help to cope with the situation.11What is caregiver burnout?.https://www.stroke.org/-/media/data-import/downloadables/5/4/2/pe-abh-what-is-caregiver-burnout-ucm_300657.pdf?la=enGoogle Scholar The American Stroke Association has a set of resources available to support caregivers at: https://www.stroke.org/en/help-and-support/for-family-caregivers. This page was developed by Abiodun Akinwuntan, PhD, MPH, MBA (e-mail address: [email protected] ); Xiaolei Hu, MD, PhD; Alexandra L. Terrill, PhD; Suzanne Perea Burns, PhD, OTR; Catherine Cooper Hay, PhD, OTR; and Samir R. Belagaje, MD. This information is not meant to replace the advice of a medical professional and should not be interpreted as a clinical practice guideline. This Information/Education Page may be reproduced for noncommercial use for health care professionals and other service providers to share with their patients or clients. Any other reproduction is subject to approval by the publisher.