Dementia
Dementia Caregiver Checklist
Whether you’re hearing of a diagnosis for the first time or noticing changing symptoms in an existing diagnosis, it can be overwhelming. Not only are you dealing with the emotional reaction to it, but you may also be receiving lots of information from the healthcare team, friends, family, or researching on your own. It’s important to take a step back and pause. All of this doesn’t need to be done at once. In fact, it can be done over a few months.
Recommendations
Here’s our recommendation for what to do after a dementia diagnosis or when recognizing new symptoms. If you’ve already done some of these steps, check them off:
Sit back and take time to process for 1-2 weeks
Everyone responds differently to a diagnosis and changes. Some people feel sad, scared, embarrassed, or angry. Others may feel a sense of relief that they can finally put a name to the symptoms they’ve been experiencing. It is rare for things to change quickly, so take time to process feelings.
Research and learn more about the diagnosis
Doing this will help you understand how the disease progresses and what to expect. You can learn helpful tips and strategies for common challenges caregivers face to make your life easier.
Follow up with the healthcare team to ask questions about the diagnosis like:
- What is causing the dementia? There are many causes of dementia. Knowing the cause will help give you a better understanding of how the disease will progress.
- Are there any additional treatments or services that are available to my care recipient?
If your care recipient was advised to stop driving, talk about plans for transportation moving forward
Some options to discuss include rides from family and friends, taxis, rideshare apps (like Uber and Lyft), public transportation, private driving services, or volunteer driver programs. You can also think about ways to avoid transportation, like ordering groceries online.
Talk to family and friends about the diagnosis and how they can support you
Caregivers can experience friends and family drifting away after a diagnosis. This can happen for different reasons, like others not being comfortable around a person with dementia or because the caregiver becomes too busy. However, it’s more important than ever to keep family and friends close and engaged with the care recipient. Socialization helps the care recipient’s brain. It can also give you respite time in the future.
Consider This
Ask your doctor for a referral to an occupational therapist (OT). OTs can do home safety assessments and driving assessments to make recommendations that can help your care recipient stay as independent and safe as possible.
Additional Recommendations
Call your local Area Agency on Aging or Aging and Disability Resource Center to find out what resources are available in your area
This might include programs that can help with shopping, cooking, transportation, cleaning, and other needs. They can also connect you with adult day programs, respite care, and caregiver support groups.
Get important legal and financial documents in order like Power of Attorney (POA) for Healthcare and POA for finances
A POA is a legal document naming who can help make decisions if the care recipient is unable to. Without it, their healthcare provider may ask someone else to make decisions based on state law. It may be someone they don’t want making decisions for them. It is important to have these documents ready in advance to be in control of what happens.
Get connected to resources that support you as a caregiver
There are many options available to explore, like caregiver support groups, online forums, counseling, respite care, and caregiver education.
You Don’t Have To Do It All At Once
These are our recommendations. You can do them in any order you like and even add in your own steps. There’s no set timeline for you to do these. You can complete them over a period of time that works for you. You can also talk to other caregivers who have been through this and find out what they did that was helpful to them.