You are an extended member of the family of someone living with dementia. In times of need, you are expected to step-in to provide both emotional support or take on a responsibility that the designated director might have dropped.
The Backup Plan Support
On your caregiving journey, you may encounter many different support systems and individuals—from medical professionals to other experienced caregivers. Through our conversations, we have collected the following resources to help support the questions or concerns you may have.
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Planning
Estate planning 101: Decide who can make decisions
Preparing for the future is an important step for any adult. Documenting who you want to make decisions on your behalf when you are no longer able to allows you to age the way you prefer while making the life of your caregivers easier.
Planning
How to have messy conversations as early as possible
It is not easy to talk about making plans for when you are older, what your end-of-life wishes are, or to bring up changes you have recently noticed. Listen to the tips and tricks of experienced social worker Jackie Herman to learn how to best approach these conversations.
Knowledge
Recognizing the signs of dementia
If you see more frequent and persistent changes in someone’s memory, social and emotional behaviour, language and/or familiar tasks, then it could indicate a potential dementia diagnosis. You may also use the Signs & Signal Journal (PDF) below to keep track of changes.
Knowledge
The value of getting a diagnosis early
Sometimes it can be hard to distinguish signs of dementia, as it can look very similar to, for example, depression. An early diagnosis can help you get the support, treatment, and care you need, and will help you and your care team plan for the future.
Knowledge
Ways to reduce your risk of getting dementia
Reducing your risk of developing dementia actually begins in childhood. While there is no guaranteed way to prevent dementia, a healthy diet such as the Mediterranean diet and vitamin B, an active lifestyle, and frequent social and cognitive engagements have all shown evidence to reduce the risks of dementia.
Knowledge
Treatments that could reduce the symptoms of dementia
Currently, there is no cure for Alzheimer’s or related dementias. Diagnosing underlying diseases that can cause or contribute to dementia can help guide treatment. In the case of Alzheimer's, there are treatments that help reduce the symptoms and even over time improve outcomes, but they don’t stop the disease in its tracks.
Support
How professional services can support caregivers
There are many different ways in which professional services can support, from hands-on caregiving, cognitive and physical stimulation, to companionship. Often caregivers wait too long. They might already face burnout or their loved ones is no longer comfortable with unfamiliar people coming in. Investigate your options early on to support your mental health.
Support
Dealing with change
In situations where realities are not aligned, it’s important to meet your loved one where they are at. Validating their feelings, acknowledging their question, and distracting them into an activity they enjoy are ways to make situations less distressing for your loved one. Understanding how the disease impacts the brain can help the care team separate behaviours that are part of the disease from the person they love.
Support
Mitigating caregiver burnout
Caregivers stress is an inevitable part of caregiving. But caregiver exhaustion can be mitigated by a number of different strategies. Most importantly caregivers from the care team need to come together and share the load.
Support
Dealing with guilt as a caregiver
Caregivers often experience guilt, for example when they take a break for themselves or when feeling like they are not doing enough. However, your loved one would likely never want you to put yourself last all the time.
Support
Supporting each other as a care team
Asking for help is uncomfortable and we don’t want to look weak. However, all caregivers need to recharge and focus on their own priorities at times. No one can do it alone. Others might want to help but don't know when or how. Dr. Christine Knight shares insights on inviting others into your care team.
Support
Self-compassion over self-care for caregivers
Self-care is important, but yet another task to accomplish. Self-compassion is about offering yourself the same compassion that you would offer to a friend. You may also use the self-compassion worksheet (PDF) below.
Support
Successful care teams: Tips from professionals
In their research and practice, these professionals have seen many examples of care teams. Here they share their insights on what makes a successful care team and how to best support each other in difficult and stressful times.
Support
Healthy grieving along the way
Alzheimer’s and related dementias are progressive and degenerative diseases, there is no cure. As a caregiver, you will experience losses every day. These losses are ambiguous because you have the person physically present, but you’re losing them emotionally and psychologically. Allow yourself to find a way to grieve the losses along the journey in a way that feels right.
DOWNLOAD / REFERENCE LIBRARY
Memory Box Guide
Come together with your care team to share memories and create a collection of items to help you connect with your loved one.
DownloadBrain Banter Card Game
Create a safe space and strengthen your care team through meaningful conversations and moments of fun. Recommended to play with your forgotten caregivers (kids 10+).
DownloadSigns & Signals Journal
Notice the different signs and signals of dementia and recognize the patterns so you can help your loved one get the support they need.
DownloadSelf-Compassion Worksheet
Identify how to treat yourself with the same care and support that you would give a friend who is struggling.
DownloadMessy Conversations Guide
Tips and tricks on how to navigate the messy and difficult conversations that you may wish to have with your loved ones.
DownloadYour Ripples Team
To create the best opportunities for success, you can assemble a team of other caregiver types to support you in your caregiving journey. Below are the caregiver types most directly associated with The Backup Plan.
Can you identify who plays these roles on your team?
The Designated Director
The person taking on the majority of care and decision making for a loved one living with dementia.
LEARN MOREThe Forgotten Caregiver
The child or teen (under 18) who cares for a (grand)parent living with dementia.
LEARN MOREThe Close Friend
The friend who is there to support a caregiver or person living with dementia.
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