Navigating Dementia Caregiving Roadmap: In the Beginning Steps 1-6 / Alzheimer’s and Other Dementias

Have you ever felt overwhelmed because you don’t know what information you need, can’t find reliable sources, or feel frustrated by too much conflicting advice?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. This podcast is bringing the first six essential steps to take immediately after diagnosis.

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Full Show Notes Here

In the Beginning - First Steps - Right after the diagnosis

1. Choose a palliative care organization.

This will likely also serve as your hospice organization later in your journey.

In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’.

Schedule an initial consultation with more than one so you can compare.

Educate yourself on what palliative care is:

27 minute The Caregiver’s Journey (TCJ) podcast: 42. When To Call In Palliative Care

2. Create an Advance Care Plan.

Get your legal documents in order and do some initial end of life preplanning with your loved ones input:

Contact your attorney or an elder law attorney NAELA.org.

Listen to this podcast or read this blog on elder law attorneys:

32 minute TCJ podcast: 31. Elder Law Attorneys

Alzheimer’s Association legal documents overview:

Leverage this End of Life Planning Worksheet.

3. Understand the financial situation.

Work with a financial advisor - especially those who focus on seniors. Elder law attorneys can also advise in this area.

Alzheimer’s Association resources overview of financial planning

4. Find support groups.

First and foremost for you. If possible, find a support group you can attend in person:

The Alzheimer's Association support group finder has support groups for a variety of types of dementia.

If your loved one is interested a support group:

Dementia minds has 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.

The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900.

5. Educate yourself on early caregiving journey topics.

Listen to these two podcasts or read these two blogs.

Memory Loss:

29 minute TCJ podcast: 2. Memory Loss

Communication:

20 minute TCJ podcast: 3. Communication – in the Beginning

6. Investigate the US Medicare GUIDE program.

Listen to this podcast or read this blog:

23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you

Understand if your loved one may be eligible:

https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs.

If you think you might be eligible, find a US Medicare GUIDE program provider near you.

There may be several who cover your zip code so explore options.

Go here to find a GUIDE program:

Enter your state.

Under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’.

Click ‘Display selected’.

You can use the plus and minus signs in the upper right corner to zoom in closer to your area.

When you find the location you want, click on the blue dot and detailed contact information will show.

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis.

2. The Messy Middle - You begin asserting control; this is when it gets messy!

3. Later On - You are managing all aspects of their care.

Full blog here