Dementia Diagnosis: First Steps As Primary Caregiver

It can be like facing the great unknown when you learn that your loved one has dementia or Alzheimer’s. A thousand questions may pop into your head. What will life look like for you and for them? What happens now? What are you supposed to do?

According to the Alzheimer’s Association, nearly 11.2 million Americans filled the role of unpaid caregiver in 2021. While a diagnosis can be difficult and intimidating, you can overcome the initial burden as you learn what next steps to take. Rest assured that there is a path forward, and many have walked a similar road.

Consider these effective first steps to take as the primary caregiver for your loved one.

Understand the Diagnosis

Most dementia diagnoses begin with a primary care doctor who refers the patient to a specialist, like a neurologist, geriatrician, or neuropsychologist for a more thorough evaluation that often includes brain imaging. If after an in-depth examination, a specialist concludes symptoms are related to cognitive decline, be sure to schedule a time to discuss the details of the diagnosis.

It’s important to know what you are dealing with because dementia is an umbrella term that can include the following:

• Alzheimer’s
• Frontotemporal dementia
• Lewy body dementia
• Vascular dementia
• Mixed dementia

It can be helpful to understand which of these apply to your loved one since it can help you better care and plan for the future. And be sure to clarify the stage of the illness or how advanced it is. This will also affect your caregiving and planning.

Because of the complexity of cognitive decline and dementia, it’s always a good idea to receive a second opinion, which can also help bring a specific diagnosis into view.

Get a Financial Plan

It’s uncertain how long Alzheimer's or dementia patients will live because life expectancy varies greatly between individuals. After a diagnosis, some may live 4-8 years while others live with the illness for 20 or more. And the specific type of dementia can also affect life expectancy, which is one reason why clarifying the diagnosis is so crucial.

In other words, you’re going to need a long-term financial plan to accommodate healthcare costs. But first, you will want to shelter the assets your loved one had because dementia patients are easily exploited as some would take advantage of their decreasing ability to detect scams and financial abuse.

This means you’ll need their support in granting you power of attorney to manage their financial affairs. They will need to give someone they trust the ability to make financial and legal decisions for them. And of course, this decision may involve other family members, as the family usually agrees on who will be designated as primary caregiver and power of attorney.

What you will need to gain financial security for your loved one:

• Permission and credentials to access bank accounts, health insurance policies, and other financial assets
• Permission to receive information from medical professionals, insurance companies, and even utility companies
• A durable power of attorney for health care and financial decisions

If your loved one doesn't designate a power of attorney, the courts will step when your loved one becomes unable to choose one. It’s better that it is handled while your family member still has the ability.

Identify Your Team

After the initial diagnosis, you might not need much help with daily caregiving tasks. But as the illness progresses, that will likely change. It’s best not to assume that you will always be able to manage on your own.

Create a plan for who can assist you as needed today, and get a tentative plan for who will be available to help in the future. Of course, no plan is set in stone, but it’s best for everyone involved to be aware of future needs so they can make accommodations as the time draws near.

But it’s not just about other family members and friends lending help. You will also want to consider community resources and at what point you would consider professional caregiving. Once you pinpoint your caregiving team, you can consider how to divide tasks.

You may choose to have a few family members or even a professional step in to help with certain tasks or in certain cases. For example, someone else may be willing to take your loved one to doctor appointments or deliver groceries. Determine who is willing to help with what and who will be on standby when you’re not feeling well yourself or need a break.

Foundation of Excellent Caregiving

Taking the time and effort to follow these steps and lay a foundation of care for your loved one will prove invaluable as you move forward. Understanding the diagnosis can help you prepare a financial and caregiving plan that will benefit your loved one the most and minimize future struggles.

And as symptoms increase, you may notice your loved one is battling incontinence, a common side-effect of most forms of dementia. TYE medical offers incontinence products that are easy to use as a caregiver. Our two-piece system for “adult diapers” or incontinence briefs allows you to change a leak-proof pad rather than dispose of the entire product. This means changes are quicker and easier.

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