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. 

Two elderly men talking


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.

Additional Resources

  • Elderly woman driving

    Care Chat: Dementia & Driving

  • Link

    Dementia Companion Cards

  • Safety Systems

    Predict The Risk: 50 Safety Checks To Do Today

  • Caregiver hugging elderly woman

    Stages Of Dementia: What To Expect