How to Balance Caregiving and Financial Wellness

Why It Matters:

  • The average lifetime cost of care for dementia has skyrocketed to an estimated $350,174
  • According to the Alzheimer’s Association, someone develops the disease every 65 seconds
  • More than 16 million Americans care for loved ones afflicted with dementia

Ryan Besch tkc.profilePicture Written by: Ryan Besch | Transamerica
Oct. 30, 2019

5 Min readClock Icon

Is the road to hell really paved with good intentions? If we’re speaking of a specific financial hell, then those who give the most may be giving away everything.

For the millions of selfless individuals who care for loved ones afflicted with Alzheimer’s disease or other forms of dementia, the emotional and physical cost of the role is sky-high.1 Tack on the financial cost of care, and the toll can seem insurmountable.

According to the Alzheimer's Association, the average lifetime cost of care for dementia in the U.S. is about $350,174, with families footing about 70% of the bill.2

To better understand the challenges facing caregivers and their families, the nonprofit Transamerica Institute® surveyed more than 3,000 non-professional family caregivers nationwide. The findings are telling:3

  • Among those currently employed (or who’ve been employed during their time as a caregiver), 3 in 4 have made some type of adjustment to their employment as a result of their caregiving duties
  • Seventy-five percent of caregivers don’t receive any form of financial assistance or payment for their work
  • Fifty-five percent say that their own health is taking a back seat to the health of their care recipient
  • Sixty-nine percent gave little or no consideration to their own financial situation when deciding to become a caregiver
  • Forty-three percent cite “just getting by” as a current financial priority
  • One of the biggest indicators of a caregiver’s long-term financial security is their total household retirement savings. Transamerica Institute’s survey found that caregivers have saved $68,000 (estimated median) in total household retirement accounts

Almost 1 in 5 caregivers say that they have taken a loan, hardship withdrawal, and/or early withdrawal from their retirement accounts as a result of becoming a caregiver.4

A new game plan

Consider following this five-step framework for navigating dementia and financial planning, developed by researchers at the MIT AgeLab.

Step 1: Assets

Beyond the assets already under management, like retirement savings or investments, consider property, household items, real estate, etc. Whose name are they in? What is their estimated value?

It may be helpful to sit down with your financial professional to iron out your or your loved one’s assets and how they are to be managed in the future.

Step 2: Income and insurance

Identify all your current income sources, including benefits, disability payments, Social Security, annuities, and pensions. Consider how these could be affected by changes in family circumstances.

Your financial professional can help you identify your main income sources and determine whether your current insurance plan(s) are fitting for the future.

Step 3: Intentions

It can be difficult to envision the impact of dementia and how the disease progresses, but talking about this early could help you and your family flesh out wishes and intentions, reducing stress later.

Where does the afflicted want to live as the disease progresses? How does he or she want care to be managed and delivered? How can he or she be sure finances will be safe?

Step 4: Banking and administration

As the health of loved ones with dementia declines, they will need more help managing day-to-day finances, including tracking expenses and paying bills.

Though you or family members may have already stepped in to lend a hand, it still makes sense to sit down with your financial professional to ensure your loved one’s wishes are being met.

The Social Security Administration features a helpful page on representative payees.5 This person, usually a family member or close friend, is appointed by the Social Security Administration to manage a loved one’s Social Security benefits. A representative payee must use the benefits to pay for the current and future needs of the beneficiary.

Step 5: Care management

Lastly, you and your family may want to discuss how to finance and facilitate care, especially when the disease progresses and caregiving becomes more demanding.

Do you and your loved one prefer in-home care to nursing care? What about assisted living? Is there a long-term care policy in place? The Health and Human Services’ has a “finding local services” page to get you started.6 Once again, we recommend sitting down with your financial professional to get your plans down on paper.

Things to Consider:

  • The earlier you have conversations about financial planning and dementia, the better
  • Learn how to identify the 10 warning signs of dementia
  • You may feel confident with your current plan, but understand dementia is a progressive disease. How far are you thinking ahead?

1"Facts and Figures,", accessed September 2019

2 "2019 Alzheimer's Disease Facts And Figures," Alzheimer's Association, 2019

3 "The Many Faces of Caregivers: A Close-Up Look at Caregiving and Its Impacts," Transamerica Institute, 2017

4 "Caregiving is Risky Business for Family Caregivers," Transamerica Institute, September 2017

5 "Representative Page,", accessed September 2019

6 "Finding Local Services,", July 2019

Neither Transamerica nor its agents or representatives may provide tax, investment or legal advice. Anyone to whom this material is promoted, marketed, or recommended should consult with and rely on their own independent tax and legal advisors and financial professional regarding their particular situation and the concepts presented herein.

About Transamerica Institute® 

Transamerica Institute® is a nonprofit, private foundation that is funded by contributions from Transamerica Life Insurance Company and its affiliates and may receive funds from unaffiliated third parties. For more information about Transamerica Institute, visit



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