A just-completed study carried out by the New York City Department for the Aging with help from community based organizations, including ICS, outlines some of the physical and emotional problems that afflict many family caregivers. These include depression, anxiety, stress, exhaustion, and higher rates of health problems like heart disease and obesity.
“Caregiving can contribute to a loss of self-identity and self-esteem,” the study notes, and “caregivers often miss doctor appointments, eat less healthily, and do not exercise. [S]ome research suggests that stress caused by caregiving is linked to a higher rate of mortality.”
To be sure, the picture isn’t entirely bleak. Family members also report that caregiving can be fulfilling. For example, many people say they appreciate the opportunity to forge stronger bonds while caring for an aging mother or father, and to reciprocate for some of the nurturing they received from their parents.
Still, it seems unfair that at a time when family members are faced with the many profoundly personal concerns of caregiving, they should also have to worry about money. But the fact is that – especially for anyone caring for a family member with dementia – it is very often necessary to navigate a complex set of financial and legal issues.
People with dementia are at risk for financial loss from at least three factors: the disease itself, which renders a person with dementia unable to manage their own finances over time; the huge industry of frauds and scams that exist expressly to steal money from vulnerable aging adults; and not being prepared to cover the cost of care they will likely need at some point.
Older adults, in general, are often targeted for financial scams, but being forewarned and educated can help people in this age cohort avoid falling victim to financial predators. AARP has excellent resources to help anyone understand, recognize and prevent fraud aimed at older adults.
For someone with dementia, however, it’s critical for involved family members to not only educate themselves, but to watch for early signs that their loved one is at risk, and create a plan to protect them from financial loss. Early warning signs might include that the family member with dementia has trouble counting money, is confused when discussing finances, or receives notices that routine bills have gone unpaid.
Ideally, conversations about financial planning and protecting financial resources should begin while the impaired family member is still able to participate. Of course, depending on the family’s history of discussing financial matters together, this may not be easy or even feasible. And with the loss of control that can accompany dementia, the person affected may be resistant to having family members involved in their finances. Despite these potential barriers, however, planning is critical.
The Uncertainty of Homecare
Millions of families need homecare to help with a loved one living with dementia, but most are not prepared to pay for it. Just three percent of Americans have long-term care insurance that will pay for some home care, usually for a limited period of time.
Medicaid, which is currently the biggest payer of homecare, is under attack. Congress is about to take up a tax-cutting plan that would put an end to the 52 year-old Medicaid entitlement and cut a trillion dollars from the program.
At the same time, the need for homecare is growing exponentially as our population ages – especially in New York City – but due to a shortage of workers, homecare agencies turn away dozens of families every month. Given this worker shortage, as well as recent legislative changes, rulemakings, and lawsuits that are likely to increase wages, families should expect the cost of homecare to rise, possibly substantially – at the same time that Medicaid may no longer be available to pay for it.
Between cost increases and worker shortages, people who need homecare may well not be able to get it – making planning all the more essential for the families of people with dementia.
Honest Expert Advice is Available – and It’s Free!
A blog post is not the place to detail the complex financial or legal information needed by family members caring for someone with dementia. But free, expert advice is available.
Caring Kind, which was formerly the New York City chapter of the Alzheimer’s Association, offers seminars for family members of people with dementia to acquaint them with the legal and financial issues associated with caring for their loved one.
These workshops are offered in English, Spanish and Chinese in all five boroughs of New York City. They cover topics including: power of attorney, health care proxy, long-term care insurance, joint bank accounts, guardianship, and Medicaid eligibility.
Registration is required to attend a workshop. Full information about this service is available here. Family members can also call Caring Kind’s 24 hour hotline to register or get more information. That number is 646.744.2900.