Tips and Tools for Everyday Living: A Guide for Stroke Caregivers T i p s a n d To o l s f o r E v e r y d a y L i v i n g : A G u i d e f o r S t r o k e C a r e g i v e r s Table of Contents Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 How to Use this Guide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Section 1 The Anatomy of Stroke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Section 2 The Psychosocial Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Section 3 Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Section 4 Leisure Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Section 5 Mobility and Skin Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Section 6 Routine Activities of Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 Section 7 Cognitive and Perceptual Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Section 8 Meal Assistance and Hydration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 Section 9 Specific Behaviours . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 1 Section 10 Managing Continence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63 Section 11 Risk Factors for Stroke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Section 12 Aphasia – Breaking Down Communication Barriers . . . . . . . . . . . . . . . . . . . . . . . . . . 69 Section 13 Quality Improvement and Monitoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Section 14 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Note This publication was prepared with input from a number of health professionals who have reviewed the information to ensure its suitability. However, the information contained herein is for reference only and is intended to supplement the learning provided by a recognized educational program that teaches personal support workers and other frontline caregivers. It should not be relied upon exclusively. The Heart and Stroke Foundation of Ontario (HSFO) and other sponsoring associations assume no responsibility or liability arising from the reader’s failure to become informed about the requirements of fulfilling their job. In addition, the HSFO and the other sponsoring associations assume no responsibility or liability arising from any error in or omis- sion from this publication, or from the use of any information or advice contained in this publication. This project is funded by the Ministry of Health and Long-Term Care. © 2002, Heart and Stroke Foundation of Ontario. All rights reserved. Published by: Heart and Stroke Foundation of Ontario, 1920 Yonge Street, 4th Floor, Toronto, Ontario M4S 3E2. Telephone: 416-489-7100 Fax: 416-489-6885 E-mail: C o o r d i n a t e d S t r o k e S t r a t e g y Introduction This Guide for stroke caregivers is the joint effort of five organizations: the Ontario Association of Community Care Access Centres, the Ontario Associations of Non-Profit Homes and Services for Seniors, the Ontario Long Term Care Association, the Ontario Community Support Association and the Heart and Stroke Foundation of Ontario. The Ontario Home Health Care Providers Association has not been a formal sponsor to date but has expressed its support for this project and its hope to be more directly involved as we move forward. The Guide is designed to provide the practical knowledge and skills needed by the people who provide care, day in and day out, to the many thousands of stroke survivors living in Ontario. Many of these caregivers are visiting people in their homes, others are providing care in long-term care facilities and still others are working in day programs and other community settings. All make an enormous difference in the lives of individuals who are struggling to deal with the often devastating impact of a stroke. This project is part of the Ontario Integrated Stroke Strategy 2000, funded by the Ministry of Health and Long-Term 1 Care . Ministry funding of this project is gratefully acknowledged. It should be noted that the opinions expressed 2 in the Guide are those of the authors and no official endorsement by the Ministry is intended or should be inferred. The Heart and Stroke Foundation of Ontario is pleased to be a partner in the implementation of the Ontario Stroke Strategy. This follows the successful completion of the Foundation-led Coordinated Stroke Strategy (CSS), a three- year demonstration project involving four regional sites, designed to test a model of coordinated stroke care across the full continuum of care. One important component of the CSS was the Stroke Rehabilitation Consensus Panel, which documented rehabilitation issues and presented a vision for the future. To begin implementation of that vision, the Foundation asked the associations identified above to participate in a joint effort to address the issues in long-term care in both the community and in stroke care facilities across the province. After commissioning some further work in needs assessment and issue identification, the group began work on this Guide and a companion video. It is our hope that these two resources will provide a good starting point for introducing “best practices” for stroke care across the province. In February 2001, the Ministry of Health and Long-Term Care designated six Regional Stroke Centres. In 2002, three additional Regional Stroke Centres and seven District Stroke Centres were designated. These Centres will be providing leadership in bringing people together at a regional level and across the full continuum of care. Over the next few years as the strategy is implemented, Stroke Centres will be named for the rest of the province. The development of partnerships across the continuum is essential for the delivery of truly client-centred stroke care. Long-term care providers are key players in these regional stroke systems. 1 For further information, please see Towards an Integrated Strategy for Ontario: Report of the Joint Stroke Strategy Working Group. June 2000 T i p s a n d To o l s f o r E v e r y d a y L i v i n g : A G u i d e f o r S t r o k e C a r e g i v e r s A project of this nature depends on the hard work and commitment of many. The members of the Steering Committee are listed and their efforts are gratefully acknowledged. The content of the guide was based on feedback received from front-line staff who work with stroke survivors at a focus group in February 2001. The participants represented the diverse geography of Ontario – rural and urban locations, as well as long-term care and community environments. Sharon Jankowski and her team at St. Joseph’s Health Care London, Parkwood Hospital, deserve special thanks for their content expertise. Lynelle Hamilton assumed much of the responsibility for editing and pulling together the content for the Guide. The material was strengthened by the responses of a number of focus group participants and reviewers: Cindy Bolton Kathryn LeBlanc Deborah Miknevicius Lynda Pyke Lianne Henn Stephanie MacDonald Kelly Motl Gloria Sebastian Sue Kearns Cally Martin Pelagie Mudibantu Kelly Waid Liz Lane Sara McEwen Chris O’Callagahan Carol Wilkins Long Term Stroke Care in Facilities & Community Steering Committee 3 Donna Corbett Director of Resident Care, Leisureworld Sue Davidson Director of Training, Ontario Community Support Association Jillian Ghesquiere Best Practices Manager, Ontario Association of Community Care Access Centres Lynelle Hamilton Consultant, Lynelle A. Hamilton & Associates Sharon Jankowski Director of Rehabilitation Program, St. Joseph’s Health Care London, Parkwood Hospital Mary Lewis Senior Manager of Government Relations, Heart and Stroke Foundation of Ontario Sandy Lomaszewycz Executive Coordinator, Integrated Provincial Stroke Strategy, Ministry of Health and Long-Term Care Sara McEwen Project Coordinator, Heart and Stroke/ University of Toronto Professional Education Partnership, Department of Occupational Therapy, University of Toronto Liz Mullan Consultant, Carnaross Consulting Inc. Bev Powell-Vinden Senior Specialist, Coordinated Stroke Strategy, Heart and Stroke Foundation of Ontario Margaret Ringland Director of Member Relations and Professional Services, Ontario Association of Non-Profit Homes and Services for Seniors Thora Smaller Coordinator of Programs & Services, Homes for the Aged Susan Thorning Chief Operations, Ontario Community Services Association Susan VanDerBent Executive Director, Ontario Home Health Care Providers’ Association The five partnering organizations are committed to continuing to work together, and we look forward to receiving and learning from your feedback. We welcome your comments on this Guide, as well your ideas about how we can make it come alive. C o o r d i n a t e d S t r o k e S t r a t e g y How to Use this Guide A stroke can be an overwhelming and life altering • Are there ways to help that make my job easier and ensure condition. In the space of a few moments, a survivor’s the person is more satisfied with the care I’m providing? life can be dramatically (and sometimes permanently) Section 8 Meal Assistance and Hydration changed. But you already know that. That’s why • How do I make sure a stroke survivor eats well and enjoys meals? you’re reading this Guide. Section 9 Specific Behaviours At first glance, you may find the length of this Guide • Why do stroke survivors sometimes say and do things a little daunting. It does contain a great deal of infor- that are frustrating for me? mation. However, it is meant to be used as a resource • What can I do to make the situation better for both of us? for specific topics. It is not meant to be read from start Section 10 Managing Continence to finish, like a novel. • Why do some stroke survivors have continence problems? • Are there ways to help that make things easier for both The Guide is organized to help you find the informa- of us? tion you need quickly and easily, and to answer your Section 11 Risk Factors for Stroke questions about working with stroke survivors: • Am I and the people I look after at risk for stroke? • What can we do about it? Section 1 The Anatomy of Stroke Section 12 Aphasia – Breaking Down • What is a stroke? Communication Barriers • Are there different kinds of stroke? • What is aphasia? 4 • What happens to the brain, body, mind, and spirit? • How can I communicate more easily with a person Section 2 The Psychosocial Effects with aphasia? • How does a stroke affect the family relations, social life, • How can I help stroke survivors with aphasia and living environment of a stroke survivor? communicate better? • How does this change in the early stages following a Section 13 Quality Monitoring stroke, or later on when a stroke survivor is placed in • What are best practices of care for stroke survivors, a long-term care facility or returns home? their families, and caregivers? Section 3 Communication Section 14 Resources • How many different ways can the ability to speak and • Where can I get more information about stroke? understand be affected by a stroke? • How can I find services and equipment to assist • What can I do to make communication easier for me a stroke survivor? and the stroke survivor? Because most topics are inter-related, we’ve cross- Section 4 Leisure Activities • How do I provide more than basic care? How can I help a referenced sections when useful information can stroke survivor have more fun and a good quality of life? be found elsewhere in the Guide. Section 5 Mobility and Skin Care This resource is intended to provide you with a basic • How does a stroke affect the person’s ability to transfer understanding of the problems that may be faced by and get around? • What can I do to assist a stroke survivor and prevent a person who has had a stroke. You’ll also find many more problems? tips and techniques to make your caregiving more Section 6 Routine Activities of Living effective and to help the survivor function to the best • What are the easiest ways to assist a stroke survivor of his or her ability. with bathing, toileting, and dressing? Throughout this Guide, we have used the terms “he” and Section 7 Cognitive and Perceptual Problems “she” interchangeably in describing the stroke survivor. • Are there “invisible” problems that cause functional difficulties for a stroke survivor? What are they? This is for convenience only, unless otherwise noted, and is not meant to be gender-specific or show bias. T i p s a n d To o l s f o r E v e r y d a y L i v i n g : A G u i d e f o r S t r o k e C a r e g i v e r s Section 1 The Anatomy of Stroke Imagine not being able to speak or control one side of preferences, and needs. By incorporating the approaches your body. Every aspect of your life would be dramatical- suggested in this Guide with the principles of client- ly changed. Stroke is a leading cause of adult disability centered care (such as respect for individuality, atten- and death in Canada. Each year, between 40,000 and tion to physical comfort, providing emotional support) 50,000 people in Canada will experience a stroke. In you can contribute to an enhanced quality of life for this Guide, we’ll use the term “stroke survivor” to refer the survivors to whom you provide support. to a person who has had a stroke. As a caregiver, you will be assisting the survivor in A stroke is a sudden injury to a part of the brain caused many ways: by an interruption in its blood supply. A stroke’s effects can be long-lasting and can vary widely. The survivor • To relearn routine activities of living will most likely experience some impairment, even if • To regain abilities that will allow the survivor to it is only temporary. Approximately 75% of the people resume her lifestyle who have a stroke will have some degree of long-term disability. As a result, the survivor’s ability to do things • To support the survivor as she copes with she wants to do will be affected. The disability that challenges and frustrations 5 results from the impairment will vary from person to • To provide care and help with activities the person and can be extremely frustrating for the survivor. survivor cannot (or cannot yet) do independently. Survivors are individuals: an activity that is important to one is not necessarily as important to another. Thus, The support and help you provide will always be defined no two survivors will necessarily experience the same by what the survivor needs and by how she prefers to degree of disability, even if they have had the same be assisted. As with all the work you do, you will have type of impairment. to adapt your techniques to meet the specific needs and preferences of the survivor. The experience of having a stroke usually has a sudden and dramatic effect on the survivor. It often causes the survivor to feel fragile and vulnerable. She may feel What is a Stroke? frustrated, or become extremely sad. This can affect the survivor’s quality of life and her recovery. A stroke occurs when a blood vessel bringing oxygen and nutrients to a part of the brain bursts (hemorrhagic stroke – see Figure 1) or becomes clogged (ischemic You, the Caregiver stroke – see Figure 2). When that happens, the nerve cells in that part of the brain can’t function. As a In your work, you have an opportunity to make a result, the part of the body the affected cells control difference in the lives of those to whom you provide stops functioning. support. Each client is unique, with her own values, C o o r d i n a t e d S t r o k e S t r a t e g y Figure 1 – Burst Artery Why Does a Stroke Affect a Person in a Particular Way? The Brain’s Functions The brain functions like a computer centre, controlling all of the aspects of who we are and how we function, including our: • Personality • Emotions • Behaviour • Ability to move and coordinate movement • Ability to feel touch, temperature, pain and Figure 2 – Blocked Artery movement 6 • Ability to see • Ability to accurately interpret what we see (perception) • Ability to think, to remember, understand, plan, reason or problem-solve • Ability to communicate (speaking and understanding). Lodged blood clot blocking the flow of oxygen-rich The brain is divided into two sides or halves, called blood to the brain hemispheres. Each hemisphere has dominant func- tions. Figure 3 shows the areas of the brain known to control certain functions. The left hemisphere of the brain controls the motor If flow is not restored within minutes, brain cells and sensory functions of the right side of the body. (called neurons) are injured and many will die. It is also responsible for scientific functions, under- Without treatment, neurons will continue to die over standing written and spoken language, number skills, the next few hours. The permanently damaged neu- and reasoning. rons cannot be replaced, repaired or restored. T i p s a n d To o l s f o r E v e r y d a y L i v i n g : A G u i d e f o r S t r o k e C a r e g i v e r s Figure 3 – Functions Controlled by Areas of the Brain very important. Each artery supplies a specific area, or territory, of the brain. When the blood supply in a specific artery is interrupted, the area of the brain it supplies will be affected. Whenever the blood supply is cut off from an area, something remarkable happens. The body attempts to repair the damage. Small neighbouring arteries take over part of the damaged artery’s work. Thus, nerve cells temporarily starved of oxygen and nutrients may recov- er, although other cells still lacking an adequate supply will die. If the blood supply is cut off by a clot, mecha- nisms in the blood may attempt to dissolve the clot. Over time and in response to the injury, there is a reor- ganization of brain tissue. Other areas of brain tissue take over some of the work once done by the damaged cells. As well, areas that first appeared to be damaged may in time recover. As a result, the survivor’s ability may eventually improve, or even return to normal. 7 The right hemisphere of the brain controls the motor and sensory functions of the left side of the body. It How Does a Stroke Affect controls artistic functions, such as music, art aware- ness, and insight. It also controls perception, which the Body? includes the ability to be aware of the environment, and understanding and interpreting information from the environment. Every stroke is different. Some people suffer a mild stroke, which means that there is very little injury to Within each hemisphere, the brain is also divided into the brain. A survivor of a mild stroke usually recovers many regions. Each region controls various functions fully or has only a few problems. Another survivor of the body. Damage to a specific region may affect may have had a severe stroke in which a great deal of the functions that it controls. Some strokes are so large damage is done. When this happens, it may take a that they affect more than one region. For example, long time for the stroke survivor to regain even partial a large stroke in the left hemisphere of the brain may control of the body functions affected. In fact, even cause damage to the motor, sensory and language when two people experience the same type of stroke, areas. Consequently, a survivor’s ability to move, feel they may not experience the same degree of disability. and communicate will be affected. Four factors determine the effect of a particular stroke: To function, brain cells must have a continuous and location of the damage, severity of damage, how well sufficient supply of oxygen and nutrients. These are the body repairs the blood supply system to the brain, provided by the blood that circulates through the body. and how quickly other areas of brain tissue take over Therefore, the blood system supplying the brain is the work of the damaged cells. C o o r d i n a t e d S t r o k e S t r a t e g y Survivors will also recover differently. Many factors Early Intervention determine the recovery process: the survivor’s age and general health, personality, coping abilities and emo- A stroke is a medical emergency. It can be as life-threat- tional state, the support of family and loved ones, and ening as a heart attack. Early recognition and interven- rehabilitation. The most rapid recovery occurs during tion can literally mean the difference between surviving the first 3 to 4 months. However, recovery may con- or not, or between mild or significant impairment. tinue over many months or years. While some people are left with significant disability after a stroke, many There are five main warning signs of a stroke. They stroke survivors are able to adjust to their disability usually occur suddenly, and can be an indication of a and resume activities important to them. full-blown stroke, or a transient ischemic attack (TIA). The Five Main Warning Signs of a Stroke Common Effects of a Stroke 1. Sudden weakness, numbness and/or tingling in the face, arm or leg. Although a stroke does not affect any two people in 2. Sudden loss of speech or trouble understanding speech. exactly the same way, it often brings similar challenges. 3. Sudden loss of vision, particularly in one eye, or Some effects are associated with damage to a particular double vision. side of the brain, as each side (hemisphere) of the brain has dominant functions. Strokes that occur in 4. Sudden severe and unusual headache, or change in 8 the cerebellum or brain stem can result in dizziness, the pattern of headaches. balance problems, reduced coordination, slurred 5. Sudden loss of balance, dizziness, unsteadiness or speech and difficulty swallowing. sudden falls, especially with any of the above signs. Table 1 (page 9) summarizes some of the more common If any of the above symptoms are experienced, you effects, according to the hemisphere involved. Some are must immediately call for emergency help (911). common to both sides of the brain, and others are more Quick action improves the person’s chances of survival characteristic of right or left hemisphere damage. and making a full recovery. Without prompt treatment, brain cells will die. Then, the chances of reducing the neurological damage caused by a stroke are small. Stroke Risk Transient Ischemic Attacks (TIAs) Survivors and their families often ask many questions A TIA is essentially a mini-stroke caused by a temporarily about risk of another stroke. A person who has had blocked blood vessel. The symptoms of a TIA usually a stroke has a higher risk of having another one. The last only a few minutes. A TIA leaves no permanent risk is highest in the first year, at about 15 times the brain damage. However, it can be an important warn- risk among the general population. The risk remains ing sign that a person may be about to have a stroke. high throughout the first five years. Overall, 30% of In about 10% of cases a TIA comes before a stroke. those who have had a stroke will go on to have anoth- er one at some time. TIAs should never be ignored. By getting prompt medical attention, people who have had a TIA may Risk factors for stroke are discussed in Section 11 of be able to reduce the risk of a full-blown stroke. the Guide. T i p s a n d To o l s f o r E v e r y d a y L i v i n g : A G u i d e f o r S t r o k e C a r e g i v e r s Table 1: Common Effects by Hemisphere Effect Right Brain Damage Left Brain Damage Swallowing Dysphagia Dysphagia Loss of movement Usually on left side Usually on right side Loss of sensation Usually on left side Usually on right side Fatigue Usually Usually Communication Usually retain language ability, but may May lose language, (aphasia) may have difficulty producing speech also have dysarthria (dysarthria) Difficulty understanding and More often have perceptual impairments: Usually normal perception, but may interpreting left neglect, right vs. left discrimination, have right neglect judging depth, distance, space, passage of time Visual field loss Left visual field loss Right visual field loss Apraxia Yes Yes 9 Memory impairments Memory impairments (new spatial Memory impairments (new language information – location, time) information, i.e. names) Difficulty controlling emotions Yes Yes Difficulty thinking Impaired judgment or insight into Usually judgment is intact, good limitations. insight into limitations. Tend to overestimate physical ability, Others may think the survivor underestimate physical disability. underestimates physical ability, overestimate physical disability. May be impulsive, have a short atten- Normal attention span, reacts slowly tion span and perseveration. and cautiously. More likely to have difficulty with com- Better able to express/comprehend prehension or expression of emotions. emotions. May be seen as poorly motivated, or exhibiting “bad” behaviour.