the decision tree: a guide for informal...
TRANSCRIPT
The Decision Tree: A Guide for Informal Caregivers
This Decision Tree is a guide created for informal caregivers. Its intention is to address common
needs caregivers have and provide them with information and resources to make their journey
simpler. Information that is easily accessible allows caregivers to navigate their way through
their new role. It reminds the caregiver that caring for their family member successfully,
requires them to meet their own physical and emotional needs as well. By creating The
Decision Tree we connect caregivers with the resources they need. This lessens the possibility
of isolation and increasing the potential for meaningful and successful care.
Core Branches:
Informal Caregiver Facts
Programs for Caregivers
Education Opportunities
Care for the Caregiver
Community Resources
These branches have been selected to make up the frame of the decision tree. These categories help
navigate caregivers as they look for resources to aid them in their journey as a caregiver. The first stage
“informal caregiver facts” highlights the number of people who are doing the same thing, and allows the
user to understand they are not alone. The second branch provides a simplified explanation of programs
that are offered to informal caregivers both federally and provincially. The third branch is a resource on
understanding the dynamics of a diagnosis. Care for the caregiver, reminds the user that in order to
persevere as a caregiver you must remember to take care of yourself. The final branch provides a library
of resources that are available locally. The core branches navigate the user from the beginning of their
journey, and give them the information they need to succeed.
Once a user selects a core branch they, are able to access the subsequent branches that are related to
the core themes. These subsequent branches address a more in-depth question related to the core
branches theme.
Informal Caregiver Facts
What is an informal caregiver?
Informal caregiver quiz
Caregivers in the workforce
How to talk to your employed about being a caregiver
The positives of caring
Common emotions caregivers feel
Informal Caregivers Facts:
What is an informal caregiver?
o An informal caregiver is family member or friend who provides unpaid assistance with tasks such as: transportation and personal care. Generally, an informal caregiver is assisting an older adult to help them remain in their home, thereby reducing the demands on the healthcare system. Individuals who care for someone with a severe cognitive impairment i.e. Dementia, Alzheimer’s disease, etc. are at an elevated risk of experiencing caregiver stress and/or burden. Often informal caregivers report that the demand of their situation results in being emotionally drained. The family member is prioritized over social activities, hobbies, other family members, etc. This results in a large number (56%) of caregivers encountering difficulties with their role and experiencing stress and fatigue. Informal caregivers that are lacking large support systems are responsible for all of their finances, meal preparation, and medication coordination cleaning on top of a constant worry of their family members changing condition.
(Statistics Canada, 2015)
o Possible Informal Caregivers Quiz
Caregivers in the workforce.
o 6.1 million Caregiver’s are balancing caring for a loved one with their work
responsibilities. 50% of these caregivers are between 45-65 years of age. This time
frame is considered peak earning amounts for many in the workforce (Stats Canada
2013). Many caregivers have support systems that help spread the responsibility of
caring for a family member. However, this is not the case for every Canadian.
o “An employee with caregiving responsibilities may need to be absent from work more
often, may request flexible work arrangements, may be more distracted at work, or may
feel pressured to leave the workforce due to competing demands on their time. As a
result, employers may face pressures associated with a loss of productivity, the loss of
talented workers, increased hiring and retention costs, and greater employee stress.”
Government of Canada
o How to talk to your employer about being a caregiver?
Book an appointment to talk with your employer or immediate manager
Assess the impact of your caregiving role on your work responsibilities and the impact of
your job on your personal life, including your caregiving responsibilities, in order to
avoid stress and burnout be realistic about potential future responsibilities. Caregiving
tasks and time commitments can change depending on the health care needs of the
person to whom you provide care
Consider workplace programs or services that could help you balance work and caregiving
responsibilities, such as:
o telework
o vacation
o personal days off
o family leave
o workplace wellness days
o job sharing
o leaves of absence (such as family caregiver leave)
o employee assistance programs
o lunch and learn sessions on topics of interest to employed caregivers
o support groups within your workplace
o caregiver accommodation to provide end-of-life care (e.g. compassionate care leave)
o Check whether your workplace has any human resources policies that may apply to your
situation. If you are a union member, you may also wish to review the terms of your
existing collective agreement(s). Consult human rights laws and any applicable
employment legislation for information and advice on accommodating employees with
caregiving responsibilities. Recognize that protection from discrimination on the
grounds of family status includes caregiving in most human rights codes. This protection
comes with responsibilities for all parties, including the caregiver.
(Government of Canada)
The Positives of Caring:
o Although being an informal caregiver comes with a lot of extra stress. Many caregivers
report there are positives to the situation as well. Many enjoy providing assistance to
their family and have reported that being a caregiver has allowed them to feel closer to
the care recipient.
o Common emotions caregivers feel:
o Loneliness, frustration, resentment, love, anger, self-neglect, fatigue, difficulty in
meeting social demands, laughter, stress, sleep impairment
Programs for Caregivers
What can Canada do for
me?
CPP, OAS
Tax Return Deductibles
What can New Brunswick do
for me?
Home First Strategy
Information on possible
programs
How can I prepare myself?
Preparing my budget
Communication
Programs for Caregivers:
What can Canada do for me?
o CPP & OAS
o If you are over 65 and a caregiver, there are some added financial services you can
receive to help with the financial strain being a caregiver can bring.
o Old Age Security: you are able to receive this if you are 65 or older and have lived in
Canada for more than 10 years. The Government of Canada suggests that you begin the
application process 6 months before you turn 65. It is suggested that you completed an
income tax return during this process to avoid potential processing delays. The amount
you will receive is dependent on how long you have lived in Canada since turning 18.
o CPP: Canadian Pension Plan: If you are over 65 and a caregiver you can access your
Canadian Pension Plan fund
o Tax Return Deductibles:
o Family Caregiver Amount: If you are a caregiver for an individual 18 years of age or older
who is dependent on you because of a physical and/or mental disability you are eligible
to file this as a claim on your annual tax return. The CRA may ask for a signed statement
from a medical professional stating what the impairment is and the duration of it.
o Example: “John has been taking time off from work to take his wife Judy, who has a
physical impairment and no income, to appointments and to attend to her personal
needs. Judy's doctor certified in writing that she is dependent on her husband for her
personal needs because of her impairment. John can claim the additional FCA of $2,121
when he calculates the spouse or common-law partner amount on line 303 of his
Schedule 1.” Government of Canada
o Line 315: “If, at any time in 2016, you (either alone or with another person) maintained
a dwelling where you and one or more of your dependents lived, you may be able to
claim a maximum amount of $4,667 ($6,788 if he or she is eligible for the family
caregiver amount) for each dependent.”
o To find out if you are able to receive this deductible complete the following quiz:
: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/ncm-tx/rtrn/cmpltng/ddctns/lns300-
350/315/qstns/q1-eng.html
What can New Brunswick do for me?
o Home First Strategy: Helps older adults remain in their own homes for longer. This
program is targeting two areas; aging in place and one to one assistance with NB’s
healthcare system. It will contribute to helping older adults better navigate healthy
aging.
o “The in-home visit, specifically targeting seniors aged 70-75, is a first step in helping the
senior and/or their caregivers in navigating the system to ensure they know where to
access the services they may need now or in the future. The visits will be conducted by
trained workers to review personal wellness, health, social support, home safety, and
caregiver support. Up to $1,500 in funding will be available for minor, safety-related
home repairs to those who cannot otherwise afford them…In the second phase of the
initiative, seniors and caregivers who may require more assistance in navigating the
health and long-term care system will have access to a dedicated Seniors Navigator who
will provide them with one-on-one assistance. They will improve the co-ordination of
services across the long-term care continuum and ensure continuity for seniors”
Government of New Brunswick
o Information on Possible Programs
o New Brunswick also offer a toll free phone number that connects older adults, family
members, and caregivers with agents to explain provincial programs and services
available to the public. The line operates from Monday-Friday 8:30am-4:30pm
1-855-550-0552
o Tele-Care is a toll free bilingual service number that can be accesses 24 hours a day. You
can call this number by dialing 811 in New Brunswick. The line will allow you to get
further information on health programs for specific needs. For caregivers who have
hearing impairments Tele-Care offers a line that enables users to type messages back
and forth: 1-866-213-7920.
How can I prepare myself?
o Preparing my budget:
o Being an informal caregiver can be expensive. Think about creating a budget and
sticking to it throughout your journey. As well, there are services in place that help
lessen the financial burden by offering equipment out on loan periods free of charge.
o To start to create your budget try using one of these programs:
o http://itools-ioutils.fcac-acfc.gc.ca/BC-CB/NetInc-RevNet-eng.aspx?lang=eng
o http://www.rbcroyalbank.com/retirementresearchcentre/calculators/index.html
o If you are in need of a wheel chair, walker, etc. on a temporary basis try the HELP
program offered through the Red Cross
o Health Equipment Loan Program (HELP): This program is offered through the Canadian
Red Cross. HELP lends equipment such as: walkers, wheelchairs, bath seat and benches,
commodes and toilet seat, canes and crutches, bed handles, and other durable
equipment. This is a short term loan program that is targeted to help older adults with
mobility issues, help individuals return from the hospital sooner, and be of service to
people in palliative care.
o Communication:
o https://www.canada.ca/en/employment-social-
development/corporate/seniors/forum/caregiver-readiness-video.html
o First entering the role of caregiver can be intimidating, especially if it is not something
you have ever done before. To begin be realistic about your capabilities. What are you
prepared to do and what are you not prepared to do? Make sure what you decide fits in
with your own plans for your future as well.
Being a caregiver is hard work! If you can, create a network of support. This can be
made up of other family members, friends, co-workers, neighbors, etc. Have people in
your corner who can take some of the weight of this responsibility when it becomes too
much to handle. Remember caregivers need to take care of themselves as well.
If possible have a conversation with who you will be caring for. It is important that you
understand how to meet their needs and wishes. Ask them their wants on when/if
complications in their care arise. Ask about financial and end of life care. Do they have
an advance directive, power of attorney?
Educational Opportunities
How can I prepare for changes?
Alzheimer’s Society
What can I learn about
medications?
Medication check-list
Communication strategies
Educational Opportunities:
How can I prepare for changes?
o When the person you are caring for is diagnosed with a disease that effects their
cognitive functioning, it is likely that their behavior will begin to change. You may notice
that they may become angrier at certain times of the day, repetitive, wander more,
experience sleep disturbances, and act aggressive. These personality changes can be
shocking. You are watching someone you have known for so long begin acting in ways
you don’t understand. By connecting with organizations like the Alzheimer’s Society you
can receive information on behavioral changes and what to expect as they move
through the disease.
o First Link: is a program offered nationally through the Alzheimer’s Society. This program is a tool to introduce family members, and individuals who have been recently
diagnosed to programs and services available to them. First link allows you to receive one-on-one or group support, be referred to local healthcare providers and community services, meet other people in similar circumstances and exchange experiences get the help you need to plan your future.
To get information on First Link programs happening in New Brunswick call:
506-459-4280
o The Alzheimer’s Society of Canada can be reached toll free at: 1- 800-616-8816, if you
have access to internet you can email them at [email protected] The Alzheimer’s
Society of New Brunswick can be reached toll free at: 1-800-664-8411
o However, some questions are best left for your family healthcare professional. As you
move through your role as a caregiver write down any questions you have about the
disease and what you can expect. Bring this with you to your next appointment. Log
your experiences!
What can I learn about medications?
o Medications can help improve your loved ones condition and combat negative side
effects from their diagnosis. However, it is important to ensure that the medication they
are on is being administered safely and not producing negative side effects. Know the
risks surrounding the medication. Is there any foods or herbal supplements that cannot
be combined with this medication? Talk to your doctor about what to expect when on
this medication. Make sure you are storing the medication properly.
o Medication Checklist:
o Have you talked to your health care professional about alternatives to medication?
(Medication may not always be the best solution.) YES_ NO_
o Have you told all your doctors and your pharmacist about all of the medicine you're
loved one is taking (prescription, over-the-counter or herbal) as well as their use of
alcohol and/or tobacco? YES_ NO_
o Do you read the instructions on each of your medication containers to check for side
effects or possible ill effects of combining one medication with another? YES_ NO_
o Does your family member take their medication exactly as prescribed or know of any
alternative instructions should they forget to take it? YES_ NO_
o Do you have a list of what medications they are currently taking, and is your family
aware of it? YES_ NO_
o If they have medication allergies, do they wear a bracelet or necklace to show this? YES_
NO_
o Do they use only one pharmacy for all their prescription needs? YES_ NO_
o Have you gone through your medicine cabinet and discarded any medicines that are
past the "Best before" date? YES_ NO_
o Whenever they get a new medicine, do you ask for and obtain all the information on its
use and side effects? YES_ NO_
(Government of Canada, Public Health Agency of Canada)
Communication Strategies
o Communicating with someone who has a cognitive impairment can be difficult. Try
these 10 steps the next time you have an issue:
1. Set a positive tone for the interaction.
2. Limit distractions before trying to get their attention.
3. State your message simply and clearly.
4. Ask simple questions, and ask them one at a time.
5. Listen with your eyes, ears, and heart.
6. Break down tasks into a series of small steps.
7. When things get tough, distract and redirect.
8. Respond with affection and reassurance.
9. Remember the good times.
10. Always keep a sense of humor.
o Also remember that other people have been in your position before. Look and listen for
strategies that have worked for other caregivers.
o http://training.alz.org/products/4036/effective-communication-strategies
Care for the Caregiver
Stress
The Signs
How to manage it.
Programs to lessen your load
Respite Options
Food services
Connecting
Support Groups
Online Forum
Care for the Caregiver:
Stress:
o Being a caregiver is stressful! It can exhaust you physically and emotionally. One of the
most important things a caregiver can do is to recognize when it is becoming too much.
Many caregivers push pass this, they do not reach out for help. This leads them to
experience caregiver burnout. The Alzheimer’s Society of Canada has compiled 10
common signs of caregiver stress
o The Signs:
1. Denial about the disease and its effect on the person with the disease.
"Everyone is overreacting. I know Mom will get better."
2. Anger at the person with Alzheimer's disease, yourself and others.
"If he asks me that question once more I will scream!"
3. Withdrawing socially, you no longer want to stay in touch with friends or
participate in activities you once enjoyed.
"I don't care about getting together with friends anymore."
4. Anxiety about facing another day and what the future holds.
"I'm worried about what will happen when I can no longer provide care."
5. Depression, you feel sad and hopeless much of the time.
"I don't care anymore. What is wrong with me?"
6. Exhaustion, you barely have the energy to complete your daily tasks.
"I don't have the energy to do anything anymore."
7. Sleeplessness, you wake up in the middle of the night or have nightmares and
stressful dreams.
"I rarely sleep through the night, and don't feel refreshed in the morning."
8. Emotional reactions, you cry at minor upsets; you are often irritable.
"I cried when there was no milk for my coffee this morning. Then I yelled at my
son."
9. Lack of concentration, you have trouble focusing and you find it difficult to
complete complex tasks.
"I used to do the daily crossword. Now I am lucky if I can solve half of it."
10. Health problems, you may lose or gain weight, get sick more often (colds, flu),
or develop chronic health problems (backaches, high blood pressure).
"Since the spring, I have had either a cold or the flu. I just can't seem to shake
them."
If these are occurring on a regular basis, reach out to your doctor, social circle, or an
organization like Alzheimer’s Society of Canada for help.
o How to manage the stress:
o In the initial stages of becoming a caregiver, reach out to your social circle and let them know
what is happening. Share your story with your family, friends, co-workers, and neighbors, they
can help share the weight of being a caregiver. When you start to see the signs of stress reach
out and ask for help. Begin by trying these simple stress relieving actions.
Go for a 15-minute walk during a lunch or coffee break. Take other
opportunities to be physically active.
Eat sensibly. Avoid excessive use of caffeine and alcohol. Drink plenty of water
and juices.
Know and respect your limits. If you feel exhausted and need time off, take it.
Respect commitment for regularly scheduled time off.
Spend time with family and friends. Talk to them. Listen to their stories. Listen
to them if they become concerned with your health and well-being.
As much as possible, continue to participate in previous social and recreational
activities.
Get some rest. If you have trouble sleeping, get up and do something relaxing or
enjoyable.
Be on the lookout for any changes in your habits, attitudes and moods.
Share your own and clients' reactions and issues with colleagues. Don't hesitate
to ask others for advice.
Include yourself on the list of people you are taking care of. Take some time to
do something just for yourself every day. Taking care of yourself will put you in
better shape to give care to others.
Be self-nurturing and don't forget to laugh.
Programs to lessen your load:
o Caregiving is extremely rewarding, it also takes a lot of time. There are programs
available to you to help make this process less stressful.
o Food Services:
o Meals can be a big issue. You need to provide balanced and nutritious meals for both
yourself and the care recipient. However, there isn’t always enough time to prepare a
healthy meal. Meals on Wheels in an organization that delivers full meals hot or frozen
directly to your door, Monday-Friday. If you are a veteran or a senior caregiver you may
qualify for subsides. As well, if your family member requires meals to meet their dietary
needs this can be arranged.
For more information call Meals on Wheels at: (506) 658 – 1888
o You may also want to look to your community for help. Many churches, synagogues,
housing projects, senior centers, community centers, schools and day programs offer
meals and opportunities to socialize as a service to elders in the community for a
minimal fee.
o Respite Service:
o Respite/Relief Care is an option for caregivers. This service is when you hire a caregiver
to come into your home and take over your caregiving responsibilities. Respite services
provide informal caregivers with a much needed break and allow them to take time for
themselves. Respite Care can come in different forms. One options is hiring a worker
from an outside organization to come into your home, another option is sending your
care recipient to an adult day centre. For organizations that provide respite services
contact the Social Development Department for your region, the phone numbers are
listed in the Resources Branch of the Decision Tree.
o Adult day Centres:
o Another option that allows caregivers to have extended breaks throughout the week is
adult day centres. Adult day centres offer safe and caring social activities that help older
adults remain living at home for as long as possible. Some programs offer a meal and/or
snack with their programing and can be a good opportunity to evaluate the care-
recipients potential adjustment into long term care if needed. For caregiver’s, adults day
centres allow for much needed respite care. They provide the caregiver with free time
to spend as they wish.
For more information on adult day centres in New Brunswick call: 1-866-441-4340
Connecting:
o Many caregivers don’t have much opportunity to express what they’re going through.
While we stress the importance of building a support group, not everyone is capable of
this. The importance of communicating cannot be emphasized enough. If you are
isolated and unable to form a support network of friends, and family members there are
organizations within your community working to connect you with other caregivers.
o Support Groups:
o The Alzheimer’s Society of New Brunswick offers a monthly support group. This group welcomes caregivers to share their experiences and listen to others stories. By communicating with other caregivers you can learn their strategies, hear similar experiences, remember to care for yourself, and express how caregiving is affecting you to people who are in the same situation.
For information on meetings and how to sign up call: 506-459-4280
o If you are looking for an activity to do with your loved one try visiting a memory café. This program is welcome to persons with dementia and their family members. This program is offered through the Alzheimer’s Society of N.B and takes place across many locations in New Brunswick.
o “The program occurs monthly, and the goal is socialization with an educational component. The Café includes a presentation on a different topic each month, followed by entertainment and refreshments. This program is geared towards people of all ages, and along all stages of the dementia journey.”
Alzheimer’s Society of New Brunswick
o Online Forums: o There are many digital platforms in which caregivers can spread their stories. The
Alzheimer’s Idea Library is an online forum in which caregivers and persons with dementia can share their ideas on making improvement in all areas that this disease affects.
o Check out the website at: https://icaniwill.alz.co.uk/icaniwill.html
Community Resources
Social Development Regions
Considering a Nursing Home
Alzheimer’s Society of New Brunswick Resource Centres
Community Resources:
Social Development Regions:
o For caregivers local resources can bring awareness and make their role easier. For
additional resources outside of this guide consider contacting the social development
regional office in your area. Connect with them to find information on what is directly
available to you in your region.
o The Department of Social Development Branches in New Brunswick:
Acadian Peninsula: 1-866-441-4149
Chaleur: 1-866-441-4341
Edmundston: 1-866-441-4249
Fredericton: 1-866-444-8838
Saint John: 1-866-441-4340
Miramichi: 1-866-441-4246
Moncton: 1-866-426-5191
Restigouche: 1-866-441-4245
Considering a Nursing Home:
o As you continue as a caregiver you may notice that the care recipient has more needs
then you can meet. Their condition may worsen and taking care of them may be too
much. If you are beginning to consider placing your family member in a nursing home,
learn about how long term care works in New Brunswick.
o To start the process of entering a nursing home all potential residents must connect
with the department of social development. After an assessment is completed, and your
care recipient is decided as a candidate for nursing home care, an application to all
nursing homes within 100km’s is sent out. You may select your preferred choice and
have the right to refuse offers.
o For further information on getting an assessment, paying for long term care, and
subsidies that you may qualify for refer to the Social Development Branch in your area.
Alzheimer’s Society Of New Brunswick Resource Centres:
o To talk to someone face to face about resources in your area consider visiting the
following Alzheimer’s Society of New Brunswick Resource Centres:
o Saint John:
221 Ellerdale Street in the Senior Wellness Centre of the Loch Lomond Villa
Saint John, NB E2J 3S4
Tel: 506-634-8722
Fax:506-648-9404
E-mail: [email protected]
o Tracadie:
399-local 105, rue du Couvent
Tracadie-Sheila, NB
E1X 1B2
Tel: 506-600-7000
Fax:506-600-7001
E-mail: [email protected]
o Moncton:
1070 St. George Blvd, Unit 2B
Moncton, NB
E1E 3Y3
Tel: 506-858-8380
Fax:506-855-7697
E-mail: [email protected]
o Miramichi:
1745 Water St
Miramichi, NB
E1N 1B2
Tel:1-800-664-8411
Fax:506-453-0313
E-mail: [email protected]
o Fredericton:
320 Maple Street, Suite 100
Fredericton, NB
E3A 3R4
Tel: 506-459-4280
Fax: 506-452-0313
E-mail: [email protected]
o Edmunston:
296 Rue Victoria
Edmundston, NB
E3V 2H9
Tel: 506-735-4248
Fax:506-735-8982
E-mail: [email protected]
This Decision Tree has been created to help informal caregivers become aware of resources available
to them. These resources can lessen the weight of being a caregiver and introduce funding, programs,
contacts, and resource centres available to you.
References:
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