Alzheimer's Care Complication: Medicare May Not Cover Everything

It's the most expensive condition in the country, and without insurance, families can easily go into medical debt.

Even though nearly 50 million people in the U.S. rely on Medicare to help pay for their health care, millions of older people who have Alzheimer’s disease may find that the insurance comes up short when they need it most – when they need long-term care.

About 5 million Americans on Medicare are living with the life-crippling disease, according to the Alzheimer’s Association. For people with Alzheimer’s and their families, needs for care typically far exceed the scope of Medicare coverage, leaving them with few options.

The disconnect between coverage and needs are part of the long-term care catastrophe looming for many in the U.S., where the current population of elderly is expected to double to an estimated 88 million by 2050. The Robert Wood Johnson Foundation estimates that only 3 in 10 people ages 65 and older won’t need long-term care. And for those afflicted with a disease like Alzheimer’s, the need for that kind of care is even more critical.

One possible option to bridge the coverage gap, long-term care insurance, only pays for 12 percent of those costs nationwide. People without long-term care insurance largely look to Medicare to pick up the costs when a disease like Alzheimer’s leaves a loved one unable to take care their daily needs.

The problem? Much of the care provided at long-term facilities isn’t covered by Medicare.

An Issue of Custodial Care

The basics of Medicare coverage confuse many people. If care isn’t deemed “medically necessary,” then Medicare won’t pay for it, according to Linda Adler, founder and CEO of the patient advocacy group Pathfinders Medical.

“The part that people have a challenge with is understanding what constitutes a medical issue and what constitutes assistance or custodial care,” she says. Adler and others who represent patients are seeing growing demand as people, like those with Alzheimer’s, are faced with mounting costs, limited resources and often confusing insurance coverage.

Custodial care is often what Alzheimer’s patients need most. The nonmedical care – either at home or in a long-term care facility – makes day-to-day life more manageable. Medicare doesn’t cover assistance with bathing, dressing, eating and preparing meals, changing bed linens and help using the toilet.

Often, in the case of Alzheimer’s, a patient will become physically ill and require hospitalization for something like pneumonia or a broken hip. After inpatient treatment at the hospital, Medicare will cover some of the costs for a limited period of skilled nursing and custodial care at a nursing or rehabilitation facility. But when this period, usually 100 days, runs out, the patient is no longer covered.

“There was a time when the family could come together and care for elders at home,” Adler says. “But families now are different in many ways, and often when patients are in need of basic care, they are unable to get it from traditionally available sources.”

Most families depend on all working-age adults to contribute to the household income, so when a debilitating illness strikes, few can quit their jobs to care for a loved one. With Alzheimer’s, however, putting an elderly family member in long-term care – without the help of long-term care coverage – can be a near impossibility.

Costs of Alzheimer’s Disease

In 2014, costs associated with Alzheimer’s care are expected to reach $214 billion, making it the most expensive condition in the country, according to the Alzheimer’s Association. The amount needed to provide care for one Alzheimer’s patient ranges from $21 an hour for a home health aide to $239 a day for care in a nursing home.

Without insurance coverage for these costs, families can easily go into medical debt. Or they could try to reduce the patient’s assets in an effort to qualify for Medicaid, which has more liberal coverage for long-term care of low-income Alzheimer’s patients.

Adler says people must consider their options and make plans before it becomes an emergency. Talking with older family members about their wishes before they are incapacitated by a disease like Alzheimer’s is crucial.

“People need to understand Medicare, long-term care insurance, the different types of coverage available and the different housing options within their communities,” she says.

Waiting for a crisis will only make it more difficult to find the right services when it’s crunch time.

“There is a lot of great educational support out there and services that can help you find available senior housing, the right coverage for your needs and other options for additional assistance,” Adler says.

Family history may indicate an increased risk of developing Alzheimer’s, but there is currently no way to know for certain if your parent, your spouse or you will develop the disease. Planning for the possibility of Alzheimer’s may not be near the top of everyone’s to-do list, but playing the wait-and-see game could be a costly gamble, particularly if you’re counting on Medicare to cover long-term care costs.

Some Tips To Care For Elderly Parents From Afar

Just a generation ago, aging family members typically had at least one relative living nearby. These days, many are being cared for by baby boomer children who live far away.

Balancing careers and kids of their own, these grown children may find it difficult to move closer to parents who have begun to need daily help.

Caregiving has become "an unexpected second career" for many people in their 50s and 60s, says Tamar Shovali, who studies gerontology and teaches at Eckerd College in St. Petersburg, Florida.

"And distance caregiving is really difficult," she says.

If moving nearer to each other isn't an option, how can you provide care and support for an aging parent from afar?

Maximize visits

Make the most of periodic visits to your parents' home, says Amy Goyer, AARP's family and caregiving expert.

Look around to see what sort of shape it is in, and consider modifications (hand rails in a hallway?) that might make it safer and more convenient.

Meet briefly with any doctors your parents see regularly so you can develop a connection. Ask questions. Make sure that a prescription written by one doctor isn't conflicting with a prescription from another. This will make it easier to continue managing a parent's medical care by phone.

Also, choose a point person who lives nearby and is willing to visit your parents regularly to note any changes in their health, behavior or daily abilities.

"You can talk to them on the phone, you can even Skype and still not get a full picture," Goyer says. You need someone on-site to tell you what they're seeing.

This person could be a cousin, neighbor, good friend or someone from their faith community. If no one is available, Goyer suggests hiring a "geriatric care manager," a growing profession because so many elderly people don't have relatives nearby.

The website is one place to start searching for someone to hire.

Even if your parents live in a facility, rather than at home, see that someone visits them regularly. Small problems can get out of control quickly, Goyer says. Even at good assisted-living facilities, "there are a lot of services you expect," she says, and you have to make sure they are being delivered.

Seek out new technology

Baby boomers are increasingly using tools such as video chat and email circles (Google Hangouts is one example) to stay connected with elderly parents, says Duane Matcha, professor of sociology at Siena College in Loudonville, New York.

By creating a Google Plus group that includes parents, adult children and even grandchildren, Matcha says, distance caregivers can create a virtual support system. There is strength in numbers: The more relatives and friends who are aware of an older person's daily habits and experiences, the more likely someone will notice changes that need attention.

New technology for distance caregivers has been emerging rapidly. Shovali recommends an app called Reunion Care that keeps all of a person's medical records in one spot, plus contact information for doctors. "Friends and family can log in and put the information in, and that can be done in person or at a distance," she says.

Cameras and motion sensors can help you make sure a parent is moving around the house normally and monitor any visitors as well.

Wireless blood pressure cuffs send data to a remote user, and electronic pill boxes can let you know whether elderly parents have taken their medication.

You can even buy a door lock that can be coded to let in certain people on certain days. "Let's say on Tuesday and Thursday you have a paid caregiver coming to help your mom take a shower," Goyer says. "You can give them a certain code that's only good on Tuesdays and Thursdays," and then use a motion-sensor camera to make sure that caregiver arrived on time and left as scheduled.

Have the difficult conversations

It's difficult, and often heartbreaking, to approach your own parents about changes in their mental and physical abilities. Asking them for access to their email or voicemail passwords to help protect them from online or telephone scams, for example, can be perceived as an affront to their independence. It may be even harder to discuss planning for end-of-life medical care or burial wishes.

But have these conversations early, before critical situations emerge.

Shovali says a document called the Five Wishes Living Will (available at ) can help start the conversation about end-of-life planning. It's written in clear language, "not in legal speak or doctor speak," she says.

As for discussing whether parents should stop driving, need help managing finances or should consider moving into assisted living, Goyer says it's valuable to "make very specific observations."

For example, take a ride with them in their car. "You can say afterward, 'I really noticed you seemed to be having trouble making left turns,' or 'I noticed a lot of dings on the right side of the car,'" she says. That can lead to a conversation about whether driving is still safe.

Driving is an especially sensitive subject, Shovali and Matcha say. If elderly parents live in a suburb, giving up driving can mean loss of independence and access to many things. So find a transportation service, friend or hired caregiver to drive to medical appointments, shopping trips and social outings.

In general, Goyer says, approach difficult subjects with an "I'm here to support you. I'm not here to take over your life" attitude.

Give thought to which relatives and friends should be involved in the tough conversations. "You may be doing most of the caregiving," Goyer says, "but your brother might be the one your parents listen to."

You also might want to bring in a professional, perhaps a trusted doctor or lawyer, to offer advice.

Build a support system

Many communities offer transportation and meal delivery for elderly residents; call and find out what's available.

Even if your parents don't need much support, you might want to find clubs or organizations where they can socialize. You don't want your parents becoming isolated. Make sure they know where to reach old friends who may have moved, and tell friends and acquaintances if your parents are moving to a new home.

Finally, find a support group for yourself. Just because you aren't providing daily care in person "doesn't mean that at a distance you don't need support," Shovali says. Along with encouragement, you might find good practical advice from people with more experience caring for parents. 

If you are a caregiver and need advice regarding care options don't hesitate to contact Elder At Home at 401-475-7705 

Daughters Step Up As Elderly Caregivers

A new study suggests parents may be more grateful to have daughters around than sons as they need care in their old age.

The study conducted by Angelina Grigoryeva, a doctoral candidate in sociology at Princeton University, found that daughters provide an average of 12.3 hours of care to their elderly parents per month, compared to sons' 5.6 hours. Grigoryeva defined elderly caregiving as helping parents with daily living tasks such as dressing, traveling, eating, medication and grocery shopping.

The study was presented August 19th at the American Sociological Association's 109th Annual Meeting. The study found that given the presence of a female sibling or other helpers, the sons reduce their caregiving efforts. The amount of care daughters give varies depending on their employment or number of children, but the amount of caregiving from sons remains consistently low, Grigoryeva said.

"We found that daughters provide as much (care) as they can with given constraints, but sons provide less (care) regardless of constraints," Grigoryeva said.

The study pulled data from the 2004 University of Michigan Health and Retirement Study, a longitudinal panel study that surveys a sample of more than 26,000 Americans over the age of 50. While progress has been made for gender gaps in the workforce or in child care, Grigoryeva said elderly parent care as a role largely handled by women has remained static since 1995, the earliest year this data were available.

"This means that gender probably is having a big impact throughout (women's) whole lives," said Philip Cohen, a professor of sociology at the University of Maryland. "We see part of the reason for gender gap in pay is because women spend more time out of the workforce, taking care of children, making career sacrifices for family. This suggests that parent care is also a big factor on the gender gap."

Parent care may also have an effect on the mental and physical health of the caregivers, Grigoryeva said. Previous studies have found that people who provide care for elderly family members have negative mental and physical health consequences and also have a higher mortality rate because of the stress of balancing elder care with career.

The detrimental side-effects of caregiving for elderly parents could have potentially "intensifying effects on a series of gender inequalities pertaining to health and economic well-being," Grigoryeva said.

The study suggests that gender is the most important factor in the amount of assistance an adult will provide to their elderly parents.

"We might think of (caring for elderly relatives) as practical – who's got time or resources," said Philip Cohen. "But this study suggests it's not time and resources, it's really the gender."

Watch 'LIVING WITH DEMENTIA': Four People With Dementia Discuss Their Emotions

This brutally honest film reminds us that although dementia causes the loss of some abilities, people's feelings remain intact. Four people with dementia talk about their emotions: fear, guilt, embarrassment, isolation and powerless. In the film they give a deeply moving and personal insight into an often overlooked aspect of the condition. And it shows what differences can be made when there’s a supportive relationship with the person involved in dementia care.

The film shows how supportive relationships with families, friends and professional carers can play a key role in supporting people with dementia. The film is a powerful reminder of the importance of getting to know the person with advancing dementia as an individual and to help support them to maintain their own identity.

Key messages for practice

1. People living with dementia can still be alert and aware of their condition

2. It is important to know the person with advancing dementia as an individual and support them to maintain their own identity

3. Although dementia causes the loss of some abilities, people's feelings remain intact; it is essential to empathise with people's emotions

4. Caring and supportive relationships help people to cope with the difficult experience of living with advancing dementia.