Did your loved one recently receive a diagnosis of dementia? Have you already worked through the first six steps of the Navigating Dementia Caregiving Roadmap? If so, you’ve built a solid foundation, and it’s time to keep going.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we created the Navigating Dementia Caregiving Roadmap to guide you through your caregiving journey. The roadmap has 20 steps, organized into three stages: In the Beginning, The Messy Middle, and Later On. For more on all three stages, see Podcast and Blog episode 66. What Stage of Dementia Caregiving Are You in? You will find the full, interactive roadmap, along with a free downloadable digital guide, on this Caregiving Roadmap page of The Caregivers Journey.
The roadmap page includes a self-assessment tool: Five questions that will help you identify which stage of caregiving you’re currently in. You can revisit this assessment throughout your journey to help you continue to clarify what stage of the journey you are currently in. Whatever stage you’re in, we encourage you to also go back to look at the steps before that stage, so you continue learning important information for your journey.
In this post, we’re covering steps seven through ten. They are the second part of the “In the Beginning” caregiving stage. The first six steps have actions for you to take with your loved one. If you haven’t worked through these steps yet, please check them out so you can work together with your loved one. You’ll find detailed information about them with Podcast and Blog 68. The First Six Steps to Take After a Dementia Diagnosis.
Keep These Foundational Principles in Mind
With steps one through six you’re creating your solid caregiving foundation. As you move into steps seven through ten, a few principles from this foundation are helpful for you to continue prioritizing.
You’re Caregiving for Two People
It’s natural to focus entirely on your loved one after the diagnosis. Dementia caregiving is a marathon, not a sprint. You can’t sustain the journey if you’re not also prioritizing care for yourself. Keep treating your own health and wellbeing as a priority, not an afterthought.
Check Decisions Against Safe and Happy, Dignity and Independence
As you make decisions throughout your caregiving journey, ask two questions.
- First: does this decision keep my loved one and me safe, and does it keep us comfortable or happy?
- Second: does this decision support my loved one’s dignity and independence?
While the answers for these shift for your loved one throughout the journey, the importance doesn’t diminish.
In the beginning, your loved one can still manage a great deal on their own. Taking over too much, too soon undermines both their dignity and their independence. Instead, think of yourself as working behind the scenes to support them. For example, leave sticky notes, label things, and prompt gently rather than asking questions like: “Don’t you remember you were going to take a shower?”
Honor Your Grief Along the Way
In the beginning, grief tends to show up as what we call “drip grief”. These are small heartbreaks that build over time, like realizing your loved one no longer remembers their phone number or their own age. This is real grief, and it deserves real support. Find people you can process your grief with as you move through these next steps.
Step 7: Continue Your Education
In steps one through six, you worked through some foundational education, including podcasts and blogs on memory loss and communication.
- Episode 2. Memory Loss: Four Essential Tips / Alzheimer’s and Other Dementias. Here are the links to the Podcast and the Blog.
- Episode 3. Communication: In The Beginning. Here are the links to the Podcast and the Blog.
Now it’s time to build your more complete understanding of what the full caregiving journey looks like.
Take the Savvy Caregiver® Course
The Savvy Caregiver programs are widely considered the gold standard in dementia caregiving training. If your loved one can be safely left alone for a few hours, we recommend taking The Savvy Caregiver Course in person. It doubles as a support group, since you’ll be surrounded by others supporting a loved one with dementia. If in person isn’t possible, complete the online version.
Read a High-Level Guide
The Mayo Clinic’s “Living with Dementia: A Guide to Caregiving and Support” is another good resource for a high-level view of the journey ahead. Written by Mayo Clinic’s own caregiving experts, it offers practical guidance and reassurance in an approachable format.
Take a Virtual Dementia Tour®
A virtual dementia tour is an in-person experience that simulates what it’s like to live with mid- to late-stage dementia. It includes changes in vision, sensitivity, and physical feel. It’s one of the best ways to build empathy for what your loved one is experiencing, and we recommend doing it early in your journey. Tours are offered worldwide. A link to the tour, along with a podcast on the topic, are available in the roadmap.
In the United States, in your search engine, type ‘virtual dementia tour’ + ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country.
Keep in mind: the goal at this stage is a general sense of what’s ahead, not a deep dive into “The Messy Middle” or later stages. Those will come when you get there.
Step 8: Start Planning for the Next Stage of Care
This step isn’t about hiring professional caregivers yet. It’s about building your personal support network of friends and family before you need it, so you have a bridge in place before professional care becomes necessary.
Build Your Personal Support Network
Set up your network of family and friends now, while it still feels early. Decide who can help with what, and when. This gives you reprieve for things like grocery runs, and gives your loved one opportunities to get out of the house and stay engaged with others.
For additional information on this topic, please go to The Caregiver’s Journey podcast or blog episode 40. Create Your Personal Support Network.
Investigate Dementia Day Centers
You don’t need to enroll your loved one now, but it’s worth researching dementia day centers in your area while you have time to explore options. They are also known as adult day centers that include dementia care programs. Visit a few, and see whether the environment and other attendees feel like a good fit.
Most centers will let you come in for coffee to get a feel for the culture. Not every loved one will love their first day, and that’s normal. Centers that offer this can be a real lifesaver, both now and later in “The Messy Middle”, but they’re typically only appropriate earlier in the journey.
To find one, you can use this Community Resource Finder. Select Community Services and choose Adult Day Centers for your search.
Explore Memory Cafes
Memory cafes are activities you attend together with your loved one. They take the pressure off keeping your loved one entertained on your own, and they also function like a support group, connecting you with others on the same journey. Go to this Memory Cafe Directory to find one in your area.
Schedule a Home Safety Assessment
If your loved one qualified for the Medicare GUIDE program in Step Six, a home safety assessment may already be included. If not, ask your loved one’s doctor about a prescription for occupational therapy, which typically includes a home safety visit, or hire someone directly. Home safety becomes a major focus early in “The Messy Middle”, so getting ahead of it now means you’ll already know what changes to expect.
You’ll find more information about what a home safety assessment is HERE.
Step 9: Investigate Your Local Government and Community Support
If you haven’t already connected with your Area Agency on Aging (AAA) in Step One, now is the time. In the United States, this is a government resource specific to your region within your state. The main number is: 1–800–677–1116.
- There may be 10 to 15 regional AAAs in a single state.
- Ask about local resources: Call your regional AAA and ask what local government and community resources are available to you.
- Ask about a dementia care specialist: A number of states have dementia care specialists within their AAA who focus exclusively on resources for people supporting a loved one with dementia.
- Call and set up a screening for eligibility.
- They will point you to any free government services where you are eligible.
- Ask about paid caregiver eligibility: Many AAAs can also tell you whether you’re eligible to be paid as a family caregiver.
Step 10: Evaluate Driving Risks
Driving risk was originally placed later in the roadmap, closer to “The Messy Middle”, since it falls under safety. Every social worker who reviewed our roadmap before its first publication agreed on one point: driving can’t wait. It needs to be evaluated now, in the beginning.
Rules around driving with dementia vary widely by state and country. In some states, a physician is required to report a dementia diagnosis to the transportation authority. In others, including Georgia, it’s left up to the caregiver to determine whether it’s still safe for their loved one to drive. This matters: if your loved one is in an accident while driving with an undisclosed dementia diagnosis, you can face serious financial and legal consequences, even if the accident wasn’t their fault.
There’s no single right timeline for this decision. It’s common to allow driving to continue for a period after diagnosis, as long as you’re actively evaluating the risk rather than avoiding the question.
The Caregiver’s Journey episode 5: Taking Away the Keys, podcast or blog have more detailed information on this topic.
Taking Action: Move Into Steps Seven Through Ten
Once you’ve completed steps one through six and given yourself a break, come back and work through these four steps before moving into the ‘Messy Middle’:
- Continue your education: take the Savvy Caregiver® course, read a high-level guide, and take a virtual dementia tour.
- Start planning for the next stage of care: build your personal support network, investigate dementia day centers and memory cafes, and schedule a home safety assessment.
- Investigate your local government and community support: call your regional Area Agency on Aging.
- Evaluate driving risks: understand your state or country’s rules, and start assessing whether it’s still safe for your loved one to drive.
If you have tips for others who are “In the Beginning” of their caregiving journey, please share them on our Facebook or Instagram pages.
Go to thecaregiversjourney.org where you will find additional resources and information, including the Navigating Dementia Caregiving Roadmap. If you find this blog helpful, please share it with other people who you think it might help. Please follow us or subscribe to our updates. We appreciate it.
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