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Different Strokes: Recovery triumphs and challenges at any age

Contents

I Stroke recovery across the ages
II Help needed
III A family affair
IV Stroke across the ages
V Where you live matters
VI Helping the helpers
VII Subtle and lasting effects
VIII Supporting stroke recovery at any age
IX Resources and programs

--Submitted by Dr Patrice Lindsay and Stephanie Lawrence, Heart & Stroke

I Stroke recovery across the ages

Every stroke is unique, as is every stroke recovery journey. Age, stroke severity, the part of the brain affected, and other factors play a role. Yet people of all ages who experience stroke and their families encounter personal triumphs and face common challenges as they navigate through the healthcare system and reintegrate back into their life roles and activities.

The Canadian population is aging, and age is the strongest risk factor for stroke. At the same time, stroke in younger people is rising – at a rate faster than older adults. Due to increased awareness of the signs of stroke and improvements in early stroke management most people – 80% – now survive a stroke. Together this is resulting in more Canadians living with the effects of stroke and requiring services and support as they recover, especially those who return home or to a community setting.

In big picture terms, there are more than 400,000 Canadians living with long-term disability from stroke, and this number will almost double in the next 20 years. The effects range from mild to severe disability, and can be obviously physical limitations or more subtle such as memory changes. Recovery can take months or years, even for milder strokes, and many people never fully recover.

The Heart & Stroke 2017 Stroke Report (heartandstroke.ca/strokereport) looked at recovery across the ages and for Canadians who experience stroke and their families. Following are highlights from the report.

II Help needed

Half of all Canadians living with stroke need help with daily activities such as eating, bathing, dressing, going to the washroom and getting around. About 60% of stroke patients are left with some disability and more than 40% are left with moderate to severe disability that requires more intense rehabilitation and support in the community.

The most troubling part of the stroke recovery picture: overall many needs are not being met. As an example, of the stroke patients who leave inpatient acute hospital care, only about 16% get into inpatient rehabilitation right away, and only 19% within the first month after leaving hospital. This is considerably lower than the Canadian Stroke Best Practice Recommendations target of greater than 30%. There is considerable variation across regions in access to rehabilitation as well.

III A family affair

An estimated 58% of stroke patients return home after being hospitalized and 68% after receiving inpatient rehabilitation. About 10% of patients are admitted to long-term care. This highlights both the need for ensuring adequate care in the community is available and the important role of family caregivers.

“What helped was I have a family that knows I do not need hand holding. I need strong, grounded understanding that what I am going through we are all going through together.” – Alan Frew, lead singer of Glass Tiger, had a stroke in 2015 at age 58, worked hard to recover and is back performing and touring.

Family members (and this can include close friends) are key facilitators of stroke recovery. With their vital role, the family or friend caregiver should be a core member of the care team, at the centre alongside the person who had the stroke. Evidence shows patient and family-centred care results in improved health outcomes.

Stroke affects quality of life and influences family relationships in areas such as communication, problem-solving, emotional support, sexuality, closeness and empathy. While there are many challenges and life changes associated with stroke, both stroke survivors and family caregivers report some positive consequences: awareness of the other’s contribution and a sense of mutual gratitude; shift in attitude around what is important in life; a deeper appreciation for meaningful relationships with family and friends; and strengthened connections.

IV Stroke across the ages

For babies and kids recovering from stroke, it is about habilitation not rehabilitation; their brains are growing and recovering at the same time. Some of the biggest challenges facing kids with stroke are cognitive and behavioural issues such as attention deficit disorder, poor decision making, and social isolation. There is a lack of awareness of stroke in the very young, gaps in treatment and care, and little disability support.

Stroke in younger adults (20 – 59 years) is on the rise, at a rate faster than older adults. This “sandwich generation” faces unique recovery challenges around being able to drive again, returning to work or school, and raising young families while looking after older parents. Funding for recovery support services is limited; in general services exist for those under 18 and over 65 but not for those in between. This lack of benefits can be financially devastating.

The average older stroke patient has five other chronic conditions (co-morbidities), adding complexity to their recovery. Often the primary caregiver is elderly and also has chronic conditions. Many older stroke patients and their caregivers face issues around isolation and depression.

V Where you live matters

There is general agreement that while some excellent resources are available in communities, they are too few and mostly in major centres. Barriers exist around awareness, access and cost. Some challenges are specific to particular ages but others are consistent across life stages, especially the disparity between urban and rural areas.

There is a tremendous opportunity to expand telestroke – which uses telecommunication technology to link referring and consulting healthcare sites together – to increase access to stroke rehabilitation across the country.

“One thing I have learned over the years is in the Indigenous community, there is a significant lack of proper resources at the community level. I feel lucky that when I had a stroke I was living in an urban area because if it had happened to me in some of the communities where I have traveled over the years I would have suffered significantly from the lack of appropriate medical care, particularly urgent medical treatment.” – Senator Murray Sinclair had a minor stroke in 2007 at age 56

VI Helping the helpers

The role of family and friends in stroke recovery is central. It is no surprise that parents are the primary caregivers for babies and children with stroke, but family members and sometimes friends provide support to stroke survivors of all ages, from young and middle-aged adults to the elderly.

At a practical level the regular presence of another person in the home allows people who have had a stroke to return home and for some to avoid institutionalization. Two-thirds of stroke survivors return home after being in hospital or after receiving inpatient rehabilitation. Family caregivers coordinate medical care and services, help with activities of daily living, navigate through the healthcare system including transitions between care environments, and support ongoing rehabilitation, emotional well-being and re-engaging with the community.

The demand for home care is increasing and family caregivers and volunteers are being relied on more heavily, yet the number of volunteers is decreasing.

VII Subtle and lasting effects

Depression is very common after stroke. It can be caused by injury to the areas of the brain that control emotions, or as an understandable response to this difficult, life-changing event. Research estimates that one-third to one-half of people who have had a stroke will develop depression and some survivors report they can deal with the physical consequences of stroke better than the psychological and emotional aspects. Screening for depression should be included in care for stroke patients of all ages and in all settings.

Post-stroke fatigue, a condition of feeling very tired even after resting, is also commonly reported, with estimated rates between 38% and 73% in people who experience stroke. This type of fatigue can last for months and even years and does not seem to be related to size, location or severity of the stroke. It may be associated with sleep disturbances or low mood in some cases and it can negatively impact a person’s ability to participate in rehabilitation or engage back in their community.

Aphasia is a language problem that masks a person’s inherent competence affecting the ability to talk with and understand others, and read and write. It affects all relationships; conversation is the currency for engaging in life. One in three stroke survivors is diagnosed with aphasia and there are more than 100,000 Canadians living with the condition, ranging from mild to severe. This number is expected to increase significantly as the population ages and the number of stroke cases increases accordingly. Speech problems are the most recognized sign of stroke onset, yet aphasia is not well recognized or understood during recovery.

To download the report visit http://heartandstroke/strokereport.ca.

VIII Supporting stroke recovery at any age

What can Canadians do?

  • Learn the signs of stroke and act FAST by calling 9-1-1 or local emergency medical services immediately - http://heartandstroke.ca/FAST
  • Know and manage your stroke risk factors. Take the Heart&Stroke Risk Assessment at heartandstroke.ca/ehealth
  • Participate in peer-to-peer networking and support groups.
  • Join the Heart & Stroke Community of Survivors. To register, go to http://heartandstroke.ca/connect
  • Familiarize yourself with the resources and supports within your community.
  • Use the Heart & Stroke and Canadian Partnership for Stroke Recovery patient resources listed in the resource section. 

What can work places and educational institutions do?

  • Ensure schools and work places are accessible for those with a disability as a result of a stroke.
  • Employers should consider ways to support caregivers and stroke patients through flexible work arrangements as they navigate through the recovery process.

What can healthcare providers do?

  • Take a holistic approach to stroke recovery.
  • Employ a multi-disciplinary team-based approach to stroke care and include all care providers.
  • Support patient-centred care, including the patient and family as a central part of the care team.
  • Engage patients and families in the design, delivery and evaluation of stroke treatment and care.
  • Recognize that patients’ and caregivers’ needs change throughout the recovery journey and develop resources and supports to deliver at the appropriate time.
  • Understand and raise awareness with other healthcare professionals and health education institutions that stroke can happen at any age and patient recovery goals and needs are partly age dependent.
  • Understand, and raise awareness of the signs of stroke, including unique signs of stroke in babies and children.
  • Ensure patients, family and other caregivers are supported across the continuum of care.  
  • Follow the Canadian Stroke Best Practice Recommendations for all ages.
  • Expand telestroke capability to go beyond emergency stroke care and use to support rehabilitation and recovery especially in smaller, rural and remote communities.
  • Provide culturally-sensitive care by recruiting Indigenous people to health careers and ensuring that all health providers working with Indigenous people have the required cultural knowledge, skills, understanding and respect.
  • Respect traditional health knowledge, recognizing and incorporating traditional healers and Elders in health care. Ensure resources and compensation for healers and Elders are appropriate.
  • Understand and determine the needs of complex patients, including those with multiple comorbidities, to provide optimal support.

What can governments do?

  • Ongoing development, implementation and evaluation of comprehensive provincial stroke strategies that leverage Canadian Stroke Best Practice Recommendations. Strategies and implementation should address the full system of stroke care and include prevention, awareness, emergency response, acute care, rehabilitation and community support. 
  • Invest in campaigns to raise awareness of the FAST signs of stroke across the country.
  • Improve access to funded/subsidized stroke rehabilitation services for all age groups across the country including rural and remote communities.
  • Improve transitions of care between acute care, rehabilitation and return to community.
  • Develop a strategy to provide adequate home care for stroke patients and their families.
  • Invest in telerehabilitation services to improve access to services across the country, including Indigenous, rural and remote communities.
  • Provide financial support for family caregivers including through access to employment insurance.
  • Recognize the important role of all family caregivers including those who live apart from the stroke patient and younger caregivers. Provide support for all stroke caregivers.
  • Support peer-to-peer and other support groups and services for stroke patients and their families.
  • Local governments should make public transit and transport solutions easy for stroke patients during throughout the recovery and rehabilitation journey.

IX Resources and programs

Heart & Stroke provides resources to support stroke patients and their families, most of which are available on the Heart & Stroke website at http://heartandstroke.ca/stroke.

  • Your Stroke Journey
  • Family Guide to Pediatric Stroke
  • Living with Stroke
  • TIA fact sheet
  • Post-stroke checklist
  • Taking Action in Community and Long Term Stroke Care
  • Stroke in Young Adults: A resource for patients and families
  • Taking Charge of Your Stroke Recovery: A Survivor’s Guide to the Canadian Stroke Best Practice Recommendations – available at strokebestpractices.ca
  • Heart & Stroke Community of Survivors Register, go to heartandstroke.ca/connect
  • Heart&Stroke Risk Assessment – This e-Tool helps people know and manage their stroke risk factors. heartandstroke.ca/ehealth

Additional resources