Finding Dementia Care Services: Charting New Territory

Finding Dementia Care Services: Charting New Territory

Wow…quite a whirlwind of weeks for us as we just moved from Connecticut to our new home in North Carolina. While the process of moving has been exciting since it is bringing us closer to family, relocating to a new state has also been stressful. One of the biggest stressors for us has been obtaining new healthcare providers. Although charting the course to new PCPs, dentists, dermatologists, and cardiologists in our “new territory” has its challenges, at least we know what we’re looking for, where to look and why we need it.

In some ways, when a loved one is diagnosed with dementia or new declines in functioning occur, it is like moving to a new state in that caregivers face the same challenge of obtaining care services. There is, however, one major difference:  new caregivers likely are unclear about what to look for, where to look and why certain kinds of care is needed. This makes the caregiving process extremely stressful. Whether a loved one is newly diagnosed or entering a new phase of decline, obtaining support is vital for the well-being of both our loved ones and for ourselves and we can utilize two types of charts for navigating this “new territory” of dementia care.

1. The Formal Chart

When we began our caregiving journey with Donna’s mom we had no idea about what dementia services were out there. Initially, we relied on what we call the “formal” network of dementia information. This is the network of agencies and services that are organizational in framework like the Alzheimer’s Association and operate on both national and state levels. Some of these groups offer online sources for finding help including:

                  – The Alzheimer’s Association Community Resource Finder

                  – The Medicare Locator for Home Health Services

                  – The Administration for Community Living Eldercare Locator

Other sources of guidance can be your State Department of Health (or “Health and Human Services), town/county Health Department or even your loved one’s primary care physician or eldercare attorney. There are also organizations, sometimes called Area Agencies on Aging, in most states that provide what is known as Care Management in which a care manager works specifically to map out how to connect you and your loved one to services based on needs.

2. The Informal Chart

Resources such as the above are very useful in accessing dementia care but we found that there is also an “informal” source of care information that is useful in building a Care Team for our loved one. This is a network of current and past caregivers who live throughout our neighborhoods, towns and cities. There is an old Chinese proverb captures the wisdom that: “What we hear, we forget…what we see, we may recall…but what we do, we understand.” Anyone who has “done” caregiving understands what most caregivers need and how to find it. Our job is to seek them out and ask them to share their wisdom.

One of the best ways to find this informal network of knowledge – although one of the most difficult – is to be open with others about our loved one’s condition and the stress of caregiving. So many people have a heart for what you are going through and are usually happy to answer any questions you have about obtaining care. In moving to NC, when we mention to someone that we’re new to town, they are quick to welcome us to the neighborhood and respond to our questions. With dementia care, if you mention to a caregiver that you’re caring for someone with dementia, they recognize you are in their “neighborhood” and will be open and responsive. While we are not suggesting that you tell everyone you meet about your caregiving experiences, you’ll know the right time for such discussions. Talking with you own healthcare providers is also a great step since they are also sources for referrals and personal support.

There are other places in your community that you can use to chart caregiving connections.  These include local churches, libraries, hospitals, mental health agencies, and, most importantly, dementia care support groups. These groups usually meet once or twice a month in person or online and are sponsored by local chapters of the Alzheimer’s Association, Alzheimer’s Foundation of America, churches, healthcare agencies, etc. The support group that we attended during our caregiving years was invaluable in helping us chart how to access good care for Mom and how to cope with stress. We strongly encourage you to join a such group and you can start with the Alzheimer’s Association Support Group Locator if don’t know of one in your area.

Seek and You Will Find

The bible verse, “Seek, and you will find,” has always been special to us on many levels, and it has always holds true when it comes to obtaining help for someone with dementia. Finding the caregiving connections we need, however, also requires the other two familiar components of the verse from the Gospel of Matthew: asking and knocking.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.”

Just like relocating to a new state, the help and support we need is out there but we have to ask, seek and knock in order to connect to it. Check out our website to link to other other caregiver support resources and always remember you are not alone as you chart your caregiving territory.

Website: tomanddonnafinn.com

Book:  A Caregiver’s Well-Being: How to Master Stress and Find Balance While Caring for

                  Loved Ones with Dementia.