You are the (grand)child of a loved one living with dementia. You are often overlooked as a caregiver, but can sense the emotional distress of the family members around you. You likely are not involved in the heavy lift of caregiving but provide emotional support.
The Forgotten Caregiver 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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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.
Dementia & Genetics: What are my risks?
You might worry about your own risks when a family member has been diagnosed with dementia. In most cases, your risk is no different from anyone else’s. With some rare variants such as Frontotemporal Dementia (often begins between the ages of 40 to 65) your risk is higher when a family member has been diagnosed.
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.
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.
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.
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.
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.
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.
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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.Download
Brain Banter Card Game
Do you want to know how your brain works and what dementia is, then this game is for you! You can play it with your care team so you can learn and prepare for the future together.Download
Your 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 Forgotten Caregiver.
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 MORE
The Protective Spouse
The person caring for their spouse or partner living with dementia.LEARN MORE
The Backup Plan
The extended family member who cares for a person living with dementia and other caregivers.LEARN MORE
The Close Friend
The friend who is there to support a caregiver or person living with dementia.LEARN MORE