The cost of Alzheimer’s caregiving
It’s no secret that the person diagnosed with Alzheimer’s is not the only one that gets affected by this disease. Gloria Brown, 79, was reminded of this when she could get a good night’s sleep. This happened because her husband, Arthur Brown, who was diagnosed with Alzheimer’s disease four years ago paced around their bedroom, all the while opening and closing drawers, and putting on and taking off his jacket – all night long.
What Ms. Brown did was ask a friend of hers and Arthur’s to take care of her husband for a bit so she could take a nap and take her much-needed rest. That day proved to be a lucky draw, as she didn’t have to make a call to their home health aide that comes visit them two times a week.
Why lucky you might ask? Well, simply put – the costs associated with help are high. The caregiver rate in the San Francisco Bay Area ranges between $25 and $35 per hour. According to her rough estimates, since her husband was diagnosed with Alzheimer’s four years ago, Ms. Brown has spent around $72,000 on caregivers, medications, and supplies.
“The cost can be staggering,” said state Assemblyman Jim Patterson (R-Fresno), the author of a proposed bill that would allow family caregivers in California to apply for an annual caregiver tax credit of up to $5,000, which would help alleviate some of the costs associated with caregiving.
A study conducted by the American Association of Retired Persons (AARP) in 2016 revealed that the average U.S. caregiver will annually spend $6,954 on out-of-pocket costs while providing care for a family member. These expenses include costs ranging from $7 medical wipes to expenses over $10,000 to equip homes with a walk-in shower or hiring help.
What is being done about it?
AARP is a bipartisan lobbying organization for people aged 50 and older that is working on bills that are similar to the one proposed by Jim Patterson in seven other state legislatures this year, according to Elaine Ryan, the vice president of State Advocacy and Strategy Integration. Those states include Arizona, Illinois, Nebraska, New Jersey, New York, Rhode Island and Wisconsin, but AARP is hoping that some of these measures could also be introduced in Florida, Massachusetts, and Ohio.
In Wisconsin, a group of two Republicans and two Democrats are pushing for the legislature that would allow the caregiver tax credit measure in the state.
“We need a whole discussion about how we can best keep people at home and meet their needs,” said state Rep. Debra Kolste, who is a Democrat that pointed out that almost everyone knows someone that provides care for a family member. She is optimistic that the tax credit measure will be approved by the Republican legislature and ultimately be signed by Wisconsin’s Democratic governor.
The state income tax credit in New Jersey was approved in 2017, and it specifically targeted caregivers of wounded veterans. Sadly though, such measures failed to be approved in other states such as Arizona last year, and Virginia and Mississippi this year.
It doesn’t look very promising at the federal level either, as proposed bills that would’ve allowed a federal income tax credit of up to $3,000 didn’t even make it through the congressional committees last year.
“Whether I’m in Billings, Mont., or in Mississippi, the caregiver tax credit is something that people are asking for,” Ryan said. “All they’re asking for is a little financial help to offset these costs.”
Brown and other caregivers praised the idea of a tax credit, and it would bring a great benefit to over 4.5 million family caregivers in California that provide care for their loved ones that are afflicted with a disability or some other chronic health condition. According to AARP’s estimates, there are over 40 million caregivers that provide care for their family members.
Even though the Browns have good medical coverage, like the majority of other seniors -they live on a fixed income.
And the costs for caring for Ms. Brown’s husband will only rise with the progression of the disease. A big part of those costs will include the bathroom bars she wants to install, which would prevent accidental injury from falling, as well as hiring additional professional help.
“I think we’re just moving into that stage where I’m going to see the dollars going out for things that will help to make things easier for him at home and more comfortable,” Brown said.
“It’s a cost you just hadn’t anticipated,” she added.
Long-term caregiving turned out to be one of the greatest issues in California’s Capitol, resulting in proposals that range from naming one of the states as “Aging Czar,” to a funding initiative for a new cash benefit for long-term care services. During his State of the State address last month, Gov. Gavin Newsom called for a master plan for aging.
“I’ve had some personal — and painful — experience with this recently,” he said during the joint session of the legislature.
Newsom’s father has dementia which ultimately led to his death last year, drew on former first lady Maria Shriver to spearhead a new Alzheimer’s Prevention and Preparedness Task Force, and asked lawmakers to approve $3 million in state funds for Alzheimer’s disease research.
Promising news from California
The bill proposed by Patterson would provide a sum of up to $5,000 in state income tax credits for family caregivers over the duration of five years, which would start in the 2020 tax year. These family caregivers would receive reimbursement for 50% of their eligible expenses, which include home retrofitting, aide hiring, as well as leasing or buying specialty equipment. This tax credit will be made available for people that have an annual income of up to $170,000, or joint income tax filers that make up to $250,000 a year.
Patterson is a Republican in the minority, and he’s hoping that he will be able to convince his colleagues his idea is financially feasible as it would allow caregivers to carry on caring for their loved ones at home, and not resorting to some more expensive government services.
“If members of the legislature and the governor would look through the eyes of their own families, friends and neighbors … I think it can be passed and be signed,” he said.
But this is going to be hard to achieve, as the new bill will have to compete in order to get approved, as California’s $21 billion surplus is also being sought after by governor and lawmakers’ proposals to fund education, health care, housing, and many other programs.
This tax credit would allow Pam Sogge, 56, from Oakland, California to hire a home health aide for three additional hours per week.
And she really needs it, as her husband, Rick Sogge, 61, has been diagnosed with early-onset Alzheimer’s and gets distraught when he’s on his own. When left alone in a room, he keeps searching for his wife almost every two minutes.
Since he still has his physical fitness, the caregiving expenses this family has are for part-time help for outings when Pam is on work, running daily chores or making doctor’s office appointments.
“You have a very uncertain financial future. You don’t know what’s going to happen. You don’t know how long it’s going to take. So you’re very conservative,” said Pam Sogge. She has been providing care for her husband for five years now.
“A tax credit, in a way, it’s permission and encouragement to get some help,” she added.
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