home & longterm care 2016 june edition

Caregiver SOS –Communication

Stroke signs and symptoms

The importance of physical activity

June 2016 www.homeandlongtermcare.ca

Young caregiversSee page 9

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3:49

4 Editor’s Note

12 Nurse Practitioner spotlight

18 Oral care in older adults

20 Caregiver’s Credo

24 Hospice palliative care

25 Caregiving award

June 2016

22 28 30

16

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Stroke signs and symptoms

Caregiver SOSlanguage

Depressionin late life

The importance of activity

Alzheimer’s travelling tips

Smart healthcare consumer tips

Cover story: Young caregivers


WHEN PEOPLE THINK of a ‘family caregiver’ they often envision a middle-aged person – usually a woman. Most picture a son or daughter caring for an aging parent; or a spouse caring for an ailing partner. Very rarely does the word caregiver conjure up the image of a young child (in some cases as young as seven). But they are out there. In fact, an estimated 12 to 28 per cent of children are caregivers – so up to 1.18 million Canadian children are currently providing care to a loved one.

This month’s cover story focuses on these young carers – who have been placed in the role of caregiver – either for a parent, grandpar-ent or sibling. Unfortunately, there are very limited resources for this unique group of caregivers. Caregiving can be an emotionally/physically taxing role for an adult – imagine how challenging it could be for a child.

In this issue you will also find tips on how to be a smart healthcare consumer, information on the importance of physical activity and oral health, as well as signs and symptoms of stroke and informa-tion on hospice palliative care.

Every article we publish is intended to assist you on your caregiving journey. If there is information you would like to see in our maga-zine, please email [email protected]

Kristie JonesEditor, Home & Long Term [email protected]

Editor’s Note

Home and Long Term Care is published for consumers who are supporting and/or involved in home care or long term care. It is available free of charge from distribution racks in hospitals across Ontario.

The statements, opinions and view-points made or expressed by the writers do not necessarily represent the opin-ions and views of Home and Long Term Care, or the publishers.

Home and Long Term Care and Members of the Advisory Board assume no responsibility or liability for claims, statements, opinions or views, written or reported by its contributing writers, including product or service informa-tion that is advertised.

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June 2016 | Home & LongTerm CARE 5

smart healthcare

By Janet Balfour

How to be a

CANADIANS ARE ACTIVE, educated and savvy consumers when making important life choices such as buying a house, buy-ing a car, booking a trip or seeking home improvements. They research and evaluate choices, while considering quality and value for money. Yet, many Canadians may not be

taking similar steps as healthcare consumers. In fact, the notion of connecting consumerism to our public healthcare system seems more like an issue for our friends south of the border. This is not the case, our current public healthcare system is not always able to provide families everything they need.

consumer

Continued on page 6


Janet Balfour PhD, Msc, BSW is the President & Chief Advocate of eAdvocate.com

More than 25 per cent of us are involved in providing informal care for a family member or close friend, and over 500,000 Canadians pay for some form of private healthcare at home. If more Canadians are now paying for healthcare, it is time to have the best information and know your choices. Here are a few helpful tips to boost your consumer confidence, support you making healthier choices and finding people who can help you better navigate the system.

You can start making great health choices today by being sure that you and your loved ones are main-taining a healthy lifestyle, by staying active, eating a healthy diet, being tobacco-free and getting lots of quality sleep. This can prevent many chronic condi-tions such as heart disease, diabetes and cancer. You should couple these healthy choices with regular check-ups with your primary physician, as well as being prepared prior to your visits by writing down all your current issues, needs and questions. You

could take advantage of your local family health team, to consult with a nurse, dietitian, or a social worker. To find out more about local family health-care teams, read about them on the Ontario Ministry of Health & Long Term Care website.

You can seek to be a more informed health advocate. Good health care information is available, both online and from healthcare providers, as well as many community based social service agencies and not-for-profit organizations. You should only consult reliable websites, with information based on sound accurate medical research. To improve the care you receive, many of these organizations, such as the Alzeheimer’s Society, Canadian Cancer Society, CARP Canada, June of Dimes, have developed extensive information about medical conditions or treatments and can refer you to local quality health-care service providers.

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You can become a more active and empowered health consumer. People take different approaches to being a smart shopper, but many Canadians seeking private home healthcare are often passively directed around the public healthcare system, conducting little or no independent research. As a healthcare consumer you may only be offered minimal publicly paid sup-port through your local CCAC (Community Care Access Centre: www.healthcareathome.ca) or Local Health Network, while others may connect with a hospital or long term care facility social worker or care director to find out about referrals to services

or ask a friend or neighbour for ideas. You can start your own research on the easy to navigate Ministry of Health & Long Term Care website at: http://www.health.gov.on.ca/en/common/ and can also benefit from searching www.healthline.ca or www.senioropolis.com or www.caregiverexchange.ca for more information on local services.

You should know you have healthcare choices, what they are and how to find them. It is very important to understand that many pri-vate companies work on contract with the Ministry of Health to provide these public hours of care. You are able to ask about the quality of these providers or seek further supports from other service provid-ers to top up these publicly paid hours. You can shop around to find the best, most affordable and personalized care for you or a loved one, by learning about other home healthcare providers or using new online caring marketplaces.

Be sure to also know what your employer and/or personal health insurance plan provides. Many pay for helpful rehab and treatment services, as well as some home healthcare supports. You may be eligible for HST exemption when contracting for private home care, if you have been eligible for some public service as well. Check with Telehealth Ontario at 1-866-797-0000 or your local CCAC care manager to know all your options.

By taking a more active role in managing you or your loved ones healthcare choices, you will also play a vital role in pushing the current healthcare system to improve. Take charge of your healthcare decisions, by asking questions, doing research and most importantly, knowing you have choices. LC


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EVER SINCE she was nine years old, Hana has been going to the doctor with her father Mohan. The appointments, however, have been for Hana’s father, not for her. Mohan has diabe-tes that is not well controlled, and his English is poor. Hana is his medical interpreter – quite a heavy load for a child. Things became even more intense when Mohan had his legs amputated due to complications from the diabetes. Hana regularly helps her dad attach and remove his prosthetic legs. Hana is now in her first year of university. She struggles with balancing her own life and post-secondary studies with the expectation that she is there to help her father and the guilt she feels when she is at school.

Hana is a young carer. It is estimated that 12 to 28 per cent of Canadian children and youth are young carers. At the upper end that translates into approximately 1.18 million children and youth. Young carers are defined as children and youth under the age of 25 who provide prolonged “adult-like” care for ill or disabled family members, including those with addictions and mental health issues. They also provide support during circumstances where parents may be absent or have language barri-ers. Experts say there is likely at least one young carer in every classroom in Canada, however they

are hard to spot. Young carers are a hidden group – many do not self identify with the role, and others feel the need to keep this aspect of their lives private for fear that others will not understand, or even worse, that they may become forc-ibly separated from their family.

Young carers support parents, grandparents and/or siblings, and spend on average anywhere from seven to 27 hours each week on caring, which is significantly

more than the two hours per week their peers are responsible for as they complete their chores. Young carers take on a wide variety of roles including but not limited to: cleaning; meal preparation; babysitting; intimate and personal care such as assistance with bathing and dressing; emotional and mental support; and helping with medication management.

Young By Lisa Levin

caregivers

Continued on page 10


While young caring has positive aspects such as enhancing family bonds, and resultant increased maturity and independence, caring responsibili-ties at such a young age can take a toll. Research shows that young carers often experience mental, emotional, psychological, social, educational, and health-related disadvantages, particularly if they do not receive some support for themselves. They have higher rates of high school dropout, underachie-ment in school, are isolated and, in some instances, bullied by peers. Young carers often find it difficult to relate to people of their own age and are less involved in “age typical” activities.

There are certain factors that increase the likelihood of a child or youth becoming a young carer. They include: • Family composition – young carers often come from single parent households and thus have more caring responsibilities than those from dual family households• Socio-economic status – young carers often live in households with lower incomes. The inability to afford other services makes them more susceptible to assuming the caregiving role themselves• Lack of availability of other supports such as other family members or friends who could help.

The number of young carers in Canada has increased by 13.5 per cent from 2006 to 2015. This is due to a variety of factors such as the aging population, the rise in lone-parent families, and a shrinking

pool of potential family caregivers due to women’s increased employment.

There are two excellent programs in Ontario that support young carers. The Powerhouse Project in the Niagara Region provides workshops, events, drop-in opportunities, respite services,and a library for young carers and individuals who support young carers. A similar project is run in Toronto by Hospice Toronto. Programs include sports, group activities, expressive arts, drama, movies, games, field-trips, homework assistance, coping skill development, leadership, cooking and nutrition, and medical education. Both

Lisa Levin is the Chair, Ontario Caregiver Coalition.



the Powerhouse Project and Hospice Toronto pro-grams help young carers build resilience and self-esteem, and simply give them time to have fun.

Two programs are not enough to reach all the young carers in Ontario. More needs to be done, and awareness must be raised on how to identify and support young carers. We can all play a part. Next time you hear about someone who is ill , look to see if there is a young carer quietly supporting them in the background – and see if you can lend a hand, cook a meal, or simply give them a hug. LC

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MY NAME: Meredith MuscatMY JOB: Nurse Practitioner

WHAT IT MEANS: Nurse practitioners are nurses who have taken additional education and work at an advanced level, with different responsibili-ties from a registered nurse. Nurse practitioners can assess a patient’s health, diagnose, treat and prescribe for many conditions. The term “primary care provider” can refer to doctors, including family doctors, and to nurse practitioners. A range of spe-cialties are possible for nurse practitioners. When I worked in hospital, my clinical specialty was in pain management.

I’VE BEEN A NURSE PRACTITIONER for 12 years, working for the Toronto Central CCAC in palliative home care for a year. Before that, I worked as a reg-istered nurse for five years.

How Nurse Practitioners work in home care: I make house calls to my clients and consult with the home palliative care physicians who are part of my team. I’m delighted to work with physicians from Temmy Latner Centre for Palliative Care. I can order tests and interpret them, make changes to a person’s treatment plan and talk to the nurse who provides care.

There are seven of us who work in palliative care at TC CCAC and other nurse practitioner colleagues in the organization with specialties in wound care, ventilation and child and family. These nurse practi-tioners visit their clients at home and consult with a

patient’s family doctor or a specialist. When a client does not have family doctor, a primary care nurse practitioner can fill that role.

A typical day for me: Every day begins with a ‘huddle’ – a short telecon-ference – with the other members of my integrated, interdisciplinary team. We are a nurse practitioner, nurse, care coordinator, home palliative physician, hospice coordinator and the nursing and personal support worker supervisor. Almost everyone on our team has special training in, and works exclusively in, palliative care. We discuss our common clients and update each other about significant changes in

By Meredith Muscat

Nurse PractitionerSpotlight on

Rght: Mereditch Muscat, Nurse Practitioner.


health for any of them. We make sure the right per-son will see each client at the right time.

After that, I see a number of clients each day. For newly referred clients, I might have a joint assess-ment with the home palliative physician or another team member. This can prevent the client and family members from repeating themselves. We can all dis-cuss a care plan together and make decisions about it more quickly.

The best part of my job: It’s such a privilege to work in home care. People are inviting you into their home. And compared to being in hospital, they are very much in the driver’s seat. The palliative

care team members are in place to find out what the person’s goals are, to explain their options and to accept their decisions, and work towards those goals. What’s different is that a lot of things take longer – getting bloodwork done in hospital can take a very short time. But in home care, there isn’t someone just down the hall who can do it.

The relationships I have developed with clients and families at this point in their lives is like nothing else I’ve experienced. They place such trust in me.

One family touched me deeply when they said, “You took what was really complicated and you simplified it, but in a way that was meaningful to us.” LC

Meredith Muscat is a Nurse Practitioner with the Toronto Central CCAC (Community Care Access Centre).

Nurse practitioners are nurses who have taken additional education and work at an advanced level, with different responsibilities from a registered nurse.

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Travellingwith a person with Alzheimer’s disease

Thinking of your summer vacation? If you’re caring for a family member with Alzheimer’s disease or other dementia, a little advance planning can make your trip less stressful and as safe as possible. In the early stages of the disease, people with Alzheimer’s may experience little difficulty and enjoy travelling. As the disease pro-gresses, changes in the person’s abilities may make it harder to manage changes in

unfamiliar surroundings and daily routine.

These tips will make your next trip more manageable:

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Plan• Include and prepare the person in your planning.

Give them a copy of the itinerary. • A new environment may be confusing for the

person with dementia. Aim for as few changes in routine as reasonably possible. The person in your care may also have some difficulty readjusting to being home afterwards.

• If you’re visiting with friends and family, tell them about the changes since your last visit. Think ahead about activities that may need to be adjust-ed. For example, the person with Alzheimer’s may function better at certain times of the day. They may need some quiet time after a social activity or one that’s physically taxing.

• Consider a holiday package, where everything is organized for you. Make sure the travel agent is aware of any special needs the person may have.

• Find out as much as you can ahead of time about your destination, so you can anticipate what to bring or how much time is required for certain activities.

• Wandering is a possible risk. Register the person with the Alzheimer Society’s MedicAlert® Safely Home®. Members receive an engraved identifica-tion, which allows police and emergency respond-ers to quickly identify the person who has wan-dered and bring the family back together.

• Make yourself known to the local police.• Take recent photographs with you and make note

of what the person is wearing.• Carry a description of the person, the names they

respond to and details of their preferred places of interest. (This is particularly important if they go missing.)

• Keep a copy of the name and number of the hotel in a familiar spot in the person’s purse or pocket, so they can ask for help in case they get lost.

• If the anticipation of the trip causes the person to become anxious, wait until just shortly before you leave to tell them.

Simplify• Try to get a direct flight.• Consider alternative forms of travelling such as

a cruise, which can have a relaxing atmosphere.

• If you’re travelling long distances by car, consider extending the time to get there and drive shorter distances each day.

Ask for help• If possible, have an additional person travel with

you to help.• Inform the airline that you’re travelling with a

person with dementia. Ask for early boarding, a wheelchair or transportation upon arrival. You may also need help with getting on and off the plane or stowing carry-on baggage.

• Request a wheelchair at the airport. Even if the person with Alzheimer’s is mobile, it can help you get from place to place. It also makes it easier to get help from airport staff and flight crew.

• Request seating near the washrooms.• If you’re staying at a hotel, let the staff know about

the person’s needs and some of the possible diffi-culties or problems you think you may encounter.

For more information or if you and your family need help and support, contact your local Alzheimer Society by visiting www.alzheimer.ca LC

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WE’VE ALL BEEN TOLD that physical activity and good eating habits are necessary to lead healthy lives. But do we understand how important these really are?

Up to about the age of 35, our bodies are extreme-ly resilient. Most of us can bounce back from almost anything. But from about 35– 65 years of age we move into what is sometimes known as “the problem stage.” We start to experience issues with our bodies that we never had to con-sider before: stubborn and consistent weight gain; spikes in our blood pressure; nagging pains in our joints; low energy. These changes can be startling to those who have always been in good health.

By the time we reach 65 plus, the problems that we were experiencing in our 40s and 50s turn into crises. The stubborn weight gain is suddenly 30 pounds, and we are on heart medication following a cardiac episode. Our chronically sore knees have made it impossible to walk and we are looking at joint replacement. Our sedentary lifestyle has become more sedentary because of chronic aches, pains and lack of energy.

There are many things we can do to increase our health and manage chronic conditions. Simple, small lifestyle changes can make a huge difference. What can you do to help your loved one stay active and strong?

By Barbara Grant

for body and mind physical activity

The importance of


Barbara Grant is the founder and president of Retrofit Pilates, a full-service fitness and wellness studio located in Toronto.

• Keep it simple. You don’t need to train for a mara-thon, you simply need to stay active. Do some-thing for 30 minutes a day that gets your heart beating a little harder and gets your body moving up and down and pushing, pulling and reaching.

• Regular daily exercise that focuses on activities of daily living are essential to maintain strength, bal-ance and independence. Exercise classes for active seniors abound at community and independent living centres. Look for “Chair Pilates” or “Chair Yoga” classes. There are also lots of specialized programs around for Parkinson’s disease, MS, Heart Health etc.

• It is necessary to do weight bearing exercises to build and maintain muscle. Weight bearing can mean either using your body weight or using weights and other resistance tools like bands and balls.

• Walking is one of the best ways to add regular exercise to your daily routine. Taking your loved one to their regular doctor’s appointment? Don’t

drop them at the door and then go and park the car. Walk from the parking lot! Want to go visit your mom or sister for a cup of tea? Go for a 30 minute walk first.

• Walking outdoors in the good weather is ideal but walking in a mall is just as good. Many malls have walking programs you can join. Maintaining a healthy weight will not only help manage heart conditions and diabetes, it will also do wonders for your joints.

With all the challenges in life it can be difficult to fit exercise in. But if we don’t make time for health now, we will have to make time for ill health later. Whether it’s a gym membership or heart medica-tion, we are going to have to pay for it eventually.

There are many things that can support better physi-cal health and wellness for the elderly. If you’re a caregiver, support and encourage your loved one with some simple activities that will help both their body and mind. Do it sooner for a better later. LC

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DID YOU KNOW? Oral health is critical to our well-being, especially for older adults who are at higher risk of develop-ing oral diseases and dental problems. Many seniors living in the community and in long-term care do not have regu-lar oral care or access to professional dental services. In addition, some older adults become more dependent on oth-ers for personal care and can no lon-ger independently maintain optimal oral care.

Research has shown that as we age we become more susceptible to plaque build-up, tooth decay, gum infection, and sores. These conditions can cause bacterial growth which can spread throughout the body.

Oral pain can significantly impact the qual-ity of sleep and has been linked to mood issues such as depression, agitation, and anxiety. This is especially true for individu-als suffering from dementia, who are often unable to express the pain that they are feel-ing. Pain can also lead to difficulties eating and to weight loss. As a result, frail seniors are more likely to develop wounds and infections due to injuries sustained by falls.

Another reason proper oral care is essential is that the condition of the mouth, lips, tongue, and teeth can provide a lot of infor-

Article submitted by The Bruyère Research Institute.

Oral care in older adults


mation on an individual’s general health and wellbe-ing. Signs such as bad breath, dry mouth, chapped lips, bleeding gums, and changes in the colouring of the mouth can, in some cases, be indicative of con-ditions such as diabetes, pneumonia, cardiovascular problems, and gastrointestinal issues.

The Bruyère Research Institute is committed to improving the well-being of older adults living in long-term care homes. In order to serve Canada’s senior population in both official languages, the Institute has successfully translated and validated oral health assessment tools from English to French. These tools have been specifically designed to be used by nurses to assess and monitor the oral health of long-term care residents. The Bruyère Research Institute has also developed, in collaboration with La Cité Collégialle, a short bilingual video for staff and caregivers on the importance of oral care.

Although the Ministry of Health and Long-Term Care may pay for some dental surgery when it is performed in hospital, routine dental services pro-vided in a dentist’s office are not covered by OHIP (Ontario Health Insurance Plan). The Bruyère Research Institute is currently exploring a model for a Mobile Dental Hygiene Teaching Unit which would enhance the provision of oral care within long-term care homes, as well as provide training opportunities for dental hygiene students. Not only could the Mobile Unit provide residents with free dental services, it would also eliminate the need for travel. Organizing a resident’s transportation and accompaniment to a dental clinic can be quite challenging. In addition, this type of travel can be very disruptive for individuals with complex medical problems, such as dementia.

What should you do? Routine assessment and screening of oral health is vital to the prevention and detection of problems before they result in serious outcomes. Caregivers can ensure good oral health by providing or assisting seniors with daily oral care, as appropriate (brushing teeth and den-tures, flossing, using an antimicrobial mouth rinse). They can also look for signs of concern such as pain, chapped lips, bad breath, dry mouth, bleeding gums, or changes in the colouring of the mouth. It is important that older adults receive regular profes-sional teeth cleaning and dental services. LC

Caregivers can ensure good oral health by providing or assisting seniors with daily oral care, as appropriate

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Karen’s

CaregivingCaregiving Credo©

33Learn to be an

advocate for the care-receiver and

for yourself.

99Consider that love

may be doing what people need, not always what they

want.

1010Maintain your own health and lifestyle,

friendships and activities. If your health fails, you

will be of no help to your care-receiver

22Realize that you

operate on two levels... intellectual and

emotional and that they don’t always

coincide.

11Try to set limits around

your caregiving... a process which doesn’t happen

overnight.

77Be aggressive.

Demand answers from everyone... physicians,

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and services.

88Ask questions constantly.

“I don’t know” is a legitimate starting point

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HAVING A STROKE can be a life-altering event for the patient and their caregiver.

When blood flow to the brain is cut off or severe-ly limited, brain tissue is deprived of oxygen and nutrients, and brain cells begin to die. This can lead to a medical emergency called a stroke.

Time is of the essence when a stroke occurs, so it’s important for caregivers to recognize the signs and symptoms of stroke and take quick action in order to minimize brain damage and other health complications.

Having a stroke can be a life-altering event for the patient and their caregiver.

Unfortunately, time is not on the side of a stroke victim, so caregivers must know the typical warn-ing signs that tell a stroke is occurring. Take note of when these stroke symptoms or warning signs occur because knowing the length of time you or the person in your care experience them will help guide doctors towards the appropriate stroke treat-ment plan.

Warning signs of stroke• Confusion and/or speech problems, such as slur-

ring words, or difficulty understanding speech.• Stroke patients can develop sudden numbness

or paralysis of the face, arm, or leg. Or, like my grandmother, paralysis on one side of the body. An easy way to tell if someone is having a stroke is to have them raise both arms over their head

at the same time. They may be having a stroke if they can’t raise one arm, or if one arm begins to fall. If one side of their mouth droops when they try to smile, that is also another sign that a stroke is occurring.

• Vision problems in one or both eyes, such as blurred or blackened vision, or seeing double.

• A sudden, severe headache, possibly with vomit-ing, dizziness, or altered consciousness.

• Loss of balance or coordination including trouble with walking, or stumbling.

It may be difficult to remember all of these stroke signs and symptoms, so if you think someone is hav-ing a stroke, remember to think and act fast – use the F.A.S.T. acronym (Face, Arms, Speech, Time):• Face: Ask the person to smile and look closely to

see if one side is drooping• Arms: See if they can they raise both arms when

asked to without one arm drifting downward?• Speech: Are they able to repeat a simple phrase

without slurring their speech or sounding strange?• Time: Don’t wait to see if more symptoms develop

or the existing ones worsen. Call 911 right away and watch the person carefully while you wait for first responders to arrive.

Stroke risk factorsThe risk factors for stroke can be broken down into three categories:1. Lifestyle2. Medical3. Unavoidable

strokeBy Melanie Ramos

Caregiver Tips

signs and symptoms

Guide to


The good news is that you can potentially lower your risk for stroke by making a few lifestyle chang-es like:• Losing weight• Getting more exercise• Drinking less alcohol• Stopping the use of illicit drugs

Your overall health may also improve when you take measures to modify these lifestyle habits. Medical risk factors may require you to seek your doctor’s advice or treatment in order to lower your risk of stroke, and to manage the conditions they are asso-ciated with.

Other stroke risk factors include:• High blood pressure and high cholesterol• Cigarette smoking or exposure to secondhand

smoke• Diabetes• Sleep apnea, which is a chronic condition that dis-

rupts your sleep by not allowing enough oxygen through your airway, resulting in shallow breath-ing or breathing pauses

• Cardiovascular disease• Atrial fibrillation, a heart arrhythmia that usually

requires treatment

If you are a caregiver and suspect that the person in your care is having a stroke, remember think F.A.S.T. (Face, Arms, Speech, Time) and act even faster by calling 911. LC

Melanie Ramos writes for Saint Elizabeth’s blog elizz.com.

Reprinted with permission.


IN CANADA, only 16-30 per cent of Canadians have access to quality end-of-life care. Improving access means more individuals can benefit from a holistic approach that supports them through-out the disease trajectory through to the natural end of their lives.

Hospice Palliative Care Ontario, speaking on behalf individual and organizational members who provide care in a variety of settings, sup-ports policy development that improves access to quality hospice palliative care in communities throughout Ontario.

Recently, the provincial government recognized the need to expand access by investing $75 million in hos-pice palliative care – a welcome investment that sup-ports improved access and includes 20 new residential hospices benefitting rural and remote communities.

What is hospice palliative care?Aimed at relieving suffering, hospice palliative care improves quality of life for individuals living with, or dying from life-limiting illness and also aims to support those who are bereaved.

In addition to expert pain and symptom manage-ment, palliative care also addresses the psycho-social, cultural, emotional and spiritual needs of individuals and their families.

Quality hospice palliative care neither hastens death or prolongs life.

Where is hospice palliative care available in Ontario?Visiting hospice services offer care in the community – individual homes, retirement residences and in a variety of other settings.

Residential hospice services are available in com-munities that raise funds to build bricks and mortar residences housing up to ten beds offering round-the-clock care and support.

When should hospice palliative care begin?Hospice palliative care is designed to support quality of life until the natural end of life. Ideally, it is introduced early in the disease trajectory – as early as at the time of diagnosis of a life-limiting illness.

Why should I learn about hospice palliative care now?In Canada, most individuals express the desire to remain at home, surrounded by their loved ones through to the natural end of their lives. Still, more than 70 per cent of Canadians are dying in hospitals.

The early introduction of hospice palliative care is shown to improve quality of life and in many cases, individuals receiving hospice palliative care live longer.

Helen Reilly is the Communication Officer at Hospice Palliative Care Ontario.

By Helen Reilly

hospiceLet’s talk about

palliative care


What can my family do to be prepared for end-of-life care?Advance Care Planning is a process that starts now, regardless of age or health status.

· Start the conversation about wishes, values, and beliefs. The discussion, between a mentally capable person and their Substitute Decision Maker (SDM), is the process of sharing wishes that helps the SDM, if called upon, to make decisions on behalf of a person, if that person is mentally incapable of making the decision themselves.

· Identify the SDM, either by confirming satisfac-tion with the Health Care Consent Act Substitute Decision Maker hierarchy or by selecting an SDM via the process of establishing a Power of Attorney for Personal Care.

· Advance Care Planning is a voluntary process of sharing your wishes either verbally, in written form or by any alternative means used to communicate.

How much does hospice palliative care cost?In Ontario, there is no cost to the user for commu-nity-based hospice palliative care. In addition to government funding, hospices rely on the generos-ity of specially trained volunteers and donors who support the annual operation of community-based hospice services.

How can I support hospice palliative care in Ontario?You can support hospice palliative care by volun-teering your time, raising awareness, donating and participating in fund raising activities.

How do I find hospice palliative care in my community?In Ontario, individuals are encouraged to call the Hospice Ontario Information line at 416-304-1477 ext. 28 or toll free at 1-800-349-3111 ext 28 and visit hpco.ca for more information. LC


MOOSA ISMAIL was a people person. The South African-born grandfather loved to dance and have fun. “He was quite a character,” says his daughter-in-law, Mona. “To me, he was just one happy person.”

That joyfulness endured even as Moosa devel-oped Alzheimer’s disease and his condition deteriorated. Mona became his constant com-panion throughout his progressive illness,

and her dedication to his care recently earned her the 2016 Heart of Home Care Award from VHA Home HealthCare in the Caregiver to an Adult category.

Moosa’s dementia first became apparent about seven years ago. “He used to go for walks on his own and he took a walk one day and just got lost,” Mona explains. “He was confused and ended up in a store. That’s when the dementia started.”

Jo-Anne Liburd is a senior communications consultant based in Toronto.

A caring heartBy Jo-Anne Liburd

Mona Ismail with her husband, Fareed at the 2016 Heart of Home Care Award event.

gets her just reward


Family caregivers are the backbone of the healthcare system and they deserve greater respite and support.

Mona, a mother of three and a professional caterer, put her career on hold to become her father-in-law’s full-time caregiver. “We didn’t even think about putting him in a nursing home. That wasn’t even part of the equation for us,” she says.

Sharing her father-in-law’s cheerful disposition and quickness to smile and laugh, Mona developed a strong bond with Moosa. Despite his illness, the Ismail house-hold was always a joyful place. She took on the role of nurse at home and at the hospital she was a strong advocate for her father-in-law with medical staff who were sometimes dismissive.

VHA’s Heart of Home Care Award recognizes individu-als who go to extraordinary lengths to care for a friend or family member who is disabled, elderly or chroni-cally ill, to enable them to live at home with more independence. The award and event are intended to both show appreciation for these unsung heroes and to draw attention to the need for more system-wide fam-ily caregiver support.

“Caregiving is a demanding job not often recognized by the outside world,” says Carol Annett, CEO and President of VHA Home HealthCare. “There are people like Mona across the province. They are the backbone of the healthcare system and they deserve greater respite and support.”

Although Moosa passed away in 2015, Mona’s care-giving continues. Her mother-in-law was recently diagnosed with early stage dementia and Mona has been administering her care. “It has changed me, yes. It’s made me a better person. I can look around me and appreciate [life]. And whatever it was that I had to do, that it is passed on – that makes me happy,” she says. You can view Mona’s video story online at http://bit.ly/HeartMona. LC

Mona’s tips for caring for someone with Dementia:• Do what you can to keep your loved

one mentally active. For as long as Moosa could, Mona always encour-aged her father-in-law to do word puzzles and crosswords to keep his mind stimulated. She played a steady stream of his favourite music through-out her home to help keep Moosa calm, relaxed and to stimulate his memory.

• Look for “props” that bring your loved one joy. A gift of a toy flower that danced to the beat of music made Moosa light up with delight every time he saw it. “It became his companion,” says Mona. “He loved that flower and it would always make him smile.”

• Help your loved one maintain a sense of dignity. Though Moosa was initially uncomfortable with Mona performing personal care, she put him at ease by saying, “right now father, pretend I’m your nurse, just like in the hospital.” This “separation” helped Moosa feel com-fortable and eased any initial feelings of embarrassment.

• Trust your instincts. On two occasions Mona felt Moosa wasn’t physically well. After prodding the doctors to investigate further, it turned out in both instances, she was right. “You know the person you’re caring for best,” Mona says.

For more caregiver tips and information visit www.familycaregiving.ca

2828 Home & LongTerm CARE | Home & LongTerm CARE | June 2016June 2016

Caregiver SOS

My mom lives in a nursing home and staff often speak in foreign languages in her presence. Mom gets upset, saying the staff is rude and she feels like they are talking about her. I don’t know what to do!

Don’t understand

This problem arises in many private homes as well as in community settings. People with dementia often have caregivers from different cultural back-grounds whose mother tongues are not English. The issue this raises is the need for education and aware-ness around communication with someone with dementia, and how it can affect the brain.

Language issues abound with dementia, among them are finding the right words in the early stages of the illness, to difficulty comprehending and expressing oneself. It is important that caregivers are aware of this and use language as a positive tool to help those they look after in their routines and care. Paranoia or suspiciousness is also often a symptom of dementia and having someone speak in

front of you in another language can indeed make one feel like they are the object of discussion. This is obviously a bigger problem if gesturing or care accompanies the discussion.

It is critical that you approach the Director of Care of the nursing home and formally sit down to discuss the issue in a productive way. The manage-ment may not be aware of the situation (as these actions may not be done in the open) and it requires their support to effect

change. Most nursing homes have government-funded resource staff available to educate and sup-port staff around such care issues. This issue can also be discussed at client care rounds and in family meetings. Get involved in the advisory council if you can and discuss it with other visiting families, if possible. You can ultimately help your relative and other residents too.

If this activity occurs when you are visiting, you may want to ask management to speak to the care worker privately and explain that your mother is very sensi-

Nira Rittenberg

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest

Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide

available at www.baycrest.org/dacg Email questions to [email protected]

Caregivers shouldn’t talk a different language around a person with dementia

By Nira Rittenberg

Communicating

June 2016June 2016 | Home & LongTerm CARE | Home & LongTerm CARE 2929

tive to this issue and that it creates stress for her. Sometimes, just a gentle reminder of “do you mind speaking in English so mom can understand?” will be enough. You will have to decide whether you feel this is a person that will respond to your feedback. Many caregivers work long hours and don’t always realize that their passing discussions can have such a strong and negative impact on clients. The work-ers may be socializing as part of a job, but this must not negatively impact on clients. Once presented to them, most of the people I encounter are shocked at

the implications of their behaviour and truly mean no harm.

When hiring care providers it is important to set clear guidelines around use of phones and lan-guage while also acknowledging that paid caregiv-ers should have time off to talk in whatever way they please as long as these conversations do not agitate the clients.

Your relative deserves to feel safe and respected while communicating in her home. LC


Older adults now outnumber children in Canada, and the mental health needs of our aging population are complex. We hear a lot about Alzheimer’s dis-

ease, and for good reason – rates of people living with dementia are expected to rise along with the aging population. But late-life depression, anxiety and

other mental health concerns are also common.

It’s my mission to change that.

IN MANY CASES, there are tangible things people can do to improve, or to manage their symptoms. While we still have much to learn, we’ve been able to pinpoint certain behaviours that can help both reduce the risk of mental health disorders in older age, and to deal with them if or when they emerge.

The link between depression and dementiaDementia can have various mental health reper-cussions, so it might be expected that struggling with dementia can lead to depression. What is par-ticularly surprising, is that it also seems to work the other way around. People who suffered from depres-sion earlier in their lives are more likely to develop dementia as they age. In fact, based on numerous studies, an episode of major depression – even at a young age – has been shown to double the risk of developing dementia. While we have various theo-

ries, researchers are trying to understand what’s at the root of this connection.

One possible explanation is that the high levels of the stress hormone cortisol associated with depres-sion might be causing shrinkage in an area of the brain called the hippocampus, which is involved in memory. In this theory, the damage caused by depression leads to impairment in the hippocampus, which in turn leads to dementia.

Another theory suggests that these conditions have common risk factors – that whatever is leading someone to depression could also increase their chances of dementia. For example, research shows that cerebrovascular disease, like a stroke or mini-strokes, is associated with both depression and Alzheimer’s. Likewise, diabetes, hypertension and obesity are all risk factors of both cerebrovascular disease and dementia.

Dr. Robert Madan is Chief of Psychiatry at Baycrest Health Sciences and an assistant professor of Geriatric Psychiatry at

the University of Toronto. Doctors’ Notes is a weekly column by members of the U of T Faculty of Medicine.

By Dr. Robert Madan

Late-life

isn’t inevitabledepression


Alzheimer’s and mental healthAlzheimer’s disease and other forms of dementia are difficult to live with, both for the person with dementia, and for their loved ones. It’s extremely common for dementia to go hand-in-hand with disorders like psychosis, depression and anxiety. It’s important to reach out for help. For extreme cases, medication is an option. There are also community resources that provide education and support. There is no one-size-fits-all treatment, but physical exer-cise, cognitive behavioural therapy or artistic activi-ties can all be effective.

Depression is common in old age – but it doesn’t have to beAging can be unsettling. We may lose loved ones, develop health issues, experience financial stress, or any combination of these. We may drop activities that once brought us joy and social connection – a disease could confine us to our home, or financial difficulties could keep us from joining a regular meal out with friends. We know that social connec-tions, a good diet and lots of exercise are important for mental health – but sometimes these just drop out of our routines. Even if they don’t, sometimes they’re just not enough to keep depression at bay.

It’s not uncommon for people to develop depressive symptoms as they age – but I believe it doesn’t need to be. It’s important to get medical help if you think you may be depressed, no matter your age. We can treat major depression by combining medication with other types of therapies, like group or individual psychotherapy. In very mild cases, counseling and lifestyle changes – such as finding ways to keep social and active – can make a big difference. We have to get past the old-age stigma and admit that it’s never too late to lead a meaningful and enjoyable life.

For more information, go to http://www.baycrest.org/educate/mental-health LC

People who suffered from depression earlier in their lives are more likely to develop dementia as they age.

MARTHADIDN’T HAVE TO GO TO THE HOSPITAL TODAY.

geriatrics.otn.ca ontariotelehomecare.ca

With Telehomecare and other virtual healthcare programs, like

the Ontario Geriatrics Learning Centre, the Ontario Telemedicine

Network supports home and community care. OTN is a non-

profi t organization supported by the Ontario Ministry of Health

and Long-Term Care and Canada Health Infoway.

home & longterm care 2016 june edition

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