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Navigating Dementia Caregiving Roadmap

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The Three Stages of the Dementia Caregiving Journey

1

In the Beginning

Your loved one receives a diagnosis.

You are the caregiver for TWO people – you have equal responsibility to both.
 You instinctively know one is your loved one, but who is the second one? It’s you!
 Your caregiving goal for both of you is keeping you safe and comfortable.

For your care receiver living with dementia, keep front and center helping them maintain as much dignity and independence as possible.

In the beginning, you are providing support in the background. The time will come when you will need to take more control.

You may begin grieving losses along the way – some minor, some more significant.
 We call this drip grief. It’s still grief.

2

The Messy Middle

You begin asserting control; this is when it gets messy!

Your care receiver still thinks they can do most things while you’re getting more involved, and this adds to their frustration.

There’s a lot of observing and adjusting while helping them maintain their independence.

Your loved one is frustrated because they aren’t what to do. Sometimes, they’re also scared.

It’s important to look at things from their perspective, maintaining empathy and connection during this challenging stage.

3

Later On

You are managing all aspects of their care.

Caregiving becomes easier in many ways at this stage – and harder in others.

Be aware of your ongoing grief (sometimes called anticipatory grief).

Prioritize self-care and reach out for support.
Click the numbered steps below for additional information and helpful links.

In the Beginning

First Steps – Right after the diagnosis

1

Reach out
for guidance

2

Update
legal documents,
end of life planning
and long term care plans

4

Find
support groups

3

Understand the
financial situation

5

Educate yourself on early
caregiving topics

6

Investigate the
US Medicare
GUIDE program

7

Continue your
education

Next Steps – You are ready for more

8

Start planning for the
next stage of care

9

Investigate your government
community support

10

Evaluate driving risks

1

Reach out for guidance

2

Update legal documents, end of life planning and long term care plans

3

Understand the financial situation

4

Find support groups

5

Educate yourself on early caregiving topics

6

Investigate the US Medicare GUIDE program

Next Steps – You are ready for more

7

Continue your education

8

Start planning for the next stage of care

9

Investigate your government community support

10

Evaluate driving risks

Messy Middle

First Steps – You are asserting more control

11

Focus on safety

12

Focus on your self-care

13

Educate yourself on activities of daily living (ADLs)

14

Create a Care Plan –
at minimum a Family Emergency Plan

Next Steps – It’s time for more support

15

Start leveraging dementia day programs

16

Start thinking about professional help

17

Continue your education

11

Focus on safety

12

Focus on your self-care

14

Create a Care Plan –

at minimum a Family Emergency Plan

13

Educate yourself on activities of
daily living (ADLs)

Next Steps – It’s time for more support

15

Start leveraging dementia
day programs

17

Continue your education

16

Start thinking about
professional help

Later On

First Steps – Right after the diagnosis

18

Pre-plan for end of life

19

Engage hospice

20

Honor Your Grief and
Navigate Death-Related Responsibilities

18

Pre-plan for end of life

19

Engage hospice

20

Honor Your Grief and

Navigate Death-Related Responsibilities

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1.  Reach out for guidance.

Investigate these organizations for valuable guidance in different ways throughout your journey.

  • In addition to providing an extra layer of medical support for your loved one alongside your primary medical team, a palliative care program also supports the family caregiver throughout the journey. Palliative care is provided alongside curative treatments focusing on improving quality of life for those with a serious illness. In the US, palliative care is usually covered by insurance with a co-pay.
  • In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’. Scroll down below sponsored ads and click on ‘More places’ to get a list with a map. Palliative care programs are not available in all areas.
    • Don’t be distracted by options that say ‘Hospice’ in their name. Palliative care programs are usually included in organizations that also provide hospice services. Don’t be scared of palliative care, educate yourself on what palliative care is:
  • Area Agency on Aging (AAA). In the US, this is a free government service. In some states AAA provides dementia care specialists/navigators who can help guide you through your journey. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.
  • A Certified Senior Advisor (CSA) can also help guide you through your journey. Some of their services are at no cost to you. Some of their services have a fee. Find a CSA near you: https://portal.csa.us/locator/
2. Update legal documents, end of life planning and other long term care plans.
  • With your loved ones input, get their legal documents in order, do some initial end of life planning, and discuss other issues such as who they would like to have take over their finances when they are no longer able and what their long term living preferences are.
4. Find support groups.
  • First and foremost for you. If possible, find a support group you can attend in person:
    • For a support group focused on a specific type of dementia, in your search engine, type ‘name of dementia type’ + ‘support group’.
    • The Alzheimer’s Association support group finder has support groups for a variety of types of dementia
  • Listen to this podcast or read this blog on finding the right support group:
  • If your loved one is interested a support group:
    • Dementia minds online groups for people living with dementia.
    • Many local senior centers have support groups for your loved one to increase socialization:
      • In the US, go to your ‘countyname’.gov website and search for a senior center.
  • If you need someone to talk you through how to find a support group for any type of dementia, call this free 24/7 helpline from The Alzheimer’s Association. You will be connected directly to someone you can talk with:
    • The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900.
    • Talk with your support group about what self-care means and ways to incorporate it in your daily plans.
    • Self-care is NOT selfish; it’s important for you throughout your entire caregiving journey.
    • The most important thing is to continuously prioritize caring for you.
3. Understand the financial situation.
5. Educate yourself on early caregiving journey topics.
6. Investigate the US Medicare GUIDE program.
7. Continue your education.
8. Start planning for the next stage of care.
  • Build your personal support network:
  • Find and try a memory cafe (Caregivers and care receivers go together).
  • Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder:
  • Ask your loved one’s medical team for a home safety assessment:
    • The goal is to have someone evaluate your home for safety and dementia care needs.
    • This is usually available through palliative care, GUIDE program, or an order from a physician.
    • You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization.
9. Investigate your local government community support.
  • In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.
  • Call and set up a screening for eligibility:
    • They will point you to any free government services where you are eligible.
    • Be sure to find out if you are eligible to get paid to be a caregiver.
10. Evaluate driving risks.
  • Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations.
  • Listen to this podcast or read this blog:
11. Focus on safety.
12. Continue to prioritize your self-care.
13. Educate yourself on activities of daily living (ADLs).
14. Create a Care Plan – at minimum a Family Emergency Plan.
15. Start or increase leveraging dementia/adult day programs.
16. Start thinking about professional help.
17. Continue your education.
18. Pre-plan for end of life.
19. Engage hospice.
  • If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it’s time to call in hospice):
    • Find a hospice organization.
    • Get a doctor’s referral.
    • Schedule an initial evaluation. It’s almost never too early to get the initial evaluation, so don’t wait.
  • Search ‘hospice’ + ‘your country’ – or in the US – ‘your state’. Scroll down until you get below the sponsored links where it says ‘Places’:
    • Click on ‘More places’ to get a list with a map.
    • Notice rating stars and those located around your area.
    • Schedule an initial consultation with two so you can compare.
  • Educate yourself on when to call in hospice:
20. Honor Your Grief and Navigate Death-Related Responsibilities.