When It's Time to Transition: Examining Services

Second in a series

Earlier we discussed environmental issues to consider when it is time for a loved one with dementia to transition to a long-term care residential facility. Today we tackle services.

As with our other list of questions, these come from the California Advocates for Nursing Home Reform.

• Are there activities especially designed for those with dementia?
• Do activity programs operate exclusively during the day or are some provided on evenings and weekend?
• Are activities individualized for each resident?
• Does the facility operate a "Safe Return" program?
• Are nutritious finger foods served?
• Are water and decaf drinks available through the day?
• Do they conduct night checks?
• How many staff members are awake during the night?

 Up next: Staff

When It's Time to Transition to a Residential Facility

First in a series

The George G. Glenner Alzheimer’s Family Centers provide a secured environment for those with dementia and other memory impairments. It’s an adult day health care center, which means it’s only open during the day. Many people mistakenly believe we’re a 24-hour residential facility.

While our participants can be with us for many years, sometimes they must move on to a skilled nursing facility that includes or specializes in dementia care. There are many wonderful facilities within San Diego County that provide these services.

This week, we thought we’d outline some questions for caregivers to consider if and when the time comes to make that transition. (And, if the state as now planned eliminates funding adult day health care and in-home health services, many more dementia patients will need to be placed.)

These checklists come from the California Advocates for Nursing Home Reform.

First up, the environment:

• Is the facility calm and quiet?
•  Does it use soft music or natural scents to create a soothing atmosphere?
• Is the place well lighted?
• Are there complex patterns on carpets or walls?
• Can staff easily observe from common and outside areas?
• Does the facility have a wander system alert?
• Do doors come equipped with a system to delay exit?
• Is there a locked and secured outdoor area for walking?

An interesting note: California law requires a resident’s or court-appointed conservator’s consent before he or she may be placed in a locked or secured perimeter facility – the type often utilized for dementia care residential facilities. No one else – including family members or an agent listed in an advance director – may give consent.

Alzheimer's Claims Another Icon

Today the world lost another icon when actor Peter Falk passed away. He'd had Alzheimer's disease for several years, according to his daughter.

Some of us who are old enough, welcomed Falk into our living rooms as we watched him solve murder mysteries in his own unique way on the long-running television series "Columbo." He also played a role in the iconic 1980s film The Princess Bride.

Some news reports mentioned a 2008 legal battle that began when Falk's daughter went to court seeking conservatorship once her father's dementia had progressed to a certain point. He apparently had named his wife legal guardian after he was first diagnosed with Alzheimer's disease.

The Falks' situation underscores the need for all families to decide on a course of action well before a parent or spouse is in need of a higher level of care. This includes legal preparations such as assigning power of attorney and preparing advanced health directives in the event they are needed. This is good advice for any family but especially so for those whose parents have begun to display signs of dementia.

Glen Campbell Has Alzheimer's Disease

Yesterday's announcement that country music legend Glen Campbell has Alzheimer's Disease has everyone abuzz. With a new album and tour, Campbell and his wife wanted everyone to understand if he lost track of a song's lyrics or song order while on stage. They made the announcement after a concert review noted his disorientation and accused the performer of being unprepared.

We're guessing that at least initially, the memory slips the Rhinestone Cowboy singer experienced were chalked up to normal aging. This is quite common. But there are some differences between the occasional lapse and the onset of Alzheimer's - a stage of the illness known as Mild Cognitive Impairment. We thought we'd take this opportunity to outline some of the differences.

Click on the image for a larger view

Can Coffee Keep Away Alzheimer's?

A new research study on mice shows that drinking ample amounts of drip-brewed coffee -- what we might call the hard stuff -- held Alzheimer's at bay.

Though the study still has a ways to go before everyone starts chugging java 'round the clock (and we really mean it since you'll be up for days drinking so much caffeine!), it does appear that caffeine and a mystery ingredient in coffee prevented mice bred to develop Alzheimer's from displaying signs of the disease. It might also help with other health issues.

From an article in a Florida newspaper:

"We found that caffeinated coffee has some rather astounding additions to caffeine that provide protection" against cognitive impairment, said Arendash. The result, he said, was a sharper increase in blood levels of growth factor called GCSF. This protein — granulocyte colony stimulating factor — is known to bolster the human immune system and has shown promise in animal studies for repairing damage from a stroke.

Scientists don't know what other chemical compound is produced when coffee is brewed, but they do know that it is stripped from beverages that are decaffeinated.

Mullan said the large human studies correlating "moderate" coffee consumption — four to five cups a day — with Alzheimer's prevention need to be better understood. The studies showed that people who drank that much coffee in their 40s and 50s had lower incidences of the disease later on.

Applauding the Volunteers Among Us

This Saturday we feted the men and women who donate time each week to visiting isolated seniors in facilities around San Diego County. They are part of the Guardian Angels program that is funded by the county's Aging and Independence Services agency and coordinated through our George G. Glenner Alzheimer's Family Centers.

In addition to sharing a few snapshots, we also wanted to share some encouraging statistics that Program Coordinator and Event Hostess Nya Moses pulled from the United Way:

• In 2008, 61.8 million Americans (26.4% of the population) contributed 8 billion hours of volunteer service worth an estimated $162 billion, based on $20.25 hourly value on volunteer time.


• Neighborhood engagement levels have risen sharply since 2007, with a 31% increase in the number of people who worked with their neighbors to fix a community problem and a 17 % increase in the number of
people who attended community meetings.

• Between September 2008 and March 2009, more than a third (37%) of nonprofit organizations report increasing the number of volunteers they use, and almost half (48%) foresee increasing their usage of volunteers in the coming year.

• Volunteers were much more likely than non-volunteers to donate to a charitable cause in 2008, with 78.2 percent contributing $25 or more compared to 38.5 percent of non-volunteers.

• About 8.24 million young people ages 16-24 volunteered in 2008, over 441,000 more than in 2007.This increase in young adult volunteers makes up almost half of the overall increase in the number of volunteers nationally.

• Adults who began volunteering as youth are twice as likely to volunteer as those who did not volunteer when they were younger.

Calling All Angels

Looking forward to tomorrow's "bruncheon" to honor all of our Guardian Angels who've donated time to visit an isolated senior.

A Massive Grassroots Movement Is Underfoot

Many of you may not be on the San Diego Alzheimer's Association mailing list. But we want to be sure everyone is aware of a movement underway to save adult day health care in California.

Here, in its entirety, is the message that was released. Please, if you know of someone in need or already using these services, consider contributing to the effort to keep many of these 35,000 individuals (not all of whom are elderly or suffering from dementia, by the way) from being placed in more expensive, long-term care facilities or forced into home isolation.

A MASSIVE GRASSROOTS OUTPOURING OF SUPPORT IS NEEDED STARTING TODAY IF WE ARE TO SAVE ADULT DAY HEALTH CARE (ADHC)


Contact Governor Brown's office at (916) 445-2841 and ask him to:

1. Sign AB 96

AB 96 authorizes the state to proceed with submission of a waiver application to Center for Medicaid and Medi-Cal Services (CMS) for a reconfigured ADHC program "Keeping Adults Free from Institutions" (KAFI). The only way to obtain a dollar for dollar federal match of state funding is to get ADHC authorized under a federal waiver.

2. Retain the $85 million appropriation in the budget

This was part of the March compromise to implement KAFI and keep some ADHC infrastructure in place to avoid the greater cost of nursing home admission, emergency room visits and hospital stays for our current ADHC population.

Contact your legislator at (click here to find the phone number for your local legislator) and ask them to:

1. Contact the Governor to:

A. Sign AB 96; and

B. Retain the $85 million appropriation in the budget

Background Information:

The State Senate voted on June 11, 2011 to approve the state budget bill and AB 96 (Blumenfield), which directs the state to apply for a federal waiver for ADHC. The Assembly will vote on AB 96 in the days ahead and is expected to pass. The Legislature must pass a balanced budget bill to the Governor by June 15 or begin forfeiting pay and expenses. It is not balanced until there are enough votes to approve extending the temporary tax measures passed in 2009. Four Republican votes are still needed for any revenue measure. For more information, check out this editorial from the Sacramento Bee outlining the importance of Adult Day Health Centers.

FACTS:

• ADHC is the only community AND medically-based long term support and service.

• The Lewin Group estimated that elimination of ADHC would cost the state $53 million more than it saves.

• In-Home Supportive Services cannot replace the skilled medical services, therapies and social work provided in ADHC.

• The strain on the health care system to absorb 35,000 chronically-ill patients will result in higher medical costs across the system.

Why ADHC Is So Important to Californians

The other week we met a lot of aging Baby Boomers at the Vital Aging Conference in Point Loma. Most thought The George G. Glenner Alzheimer's Family Centers were residential facilities, and when they learned we operated adult day health care centers, they were intrigued. Despite being around for almost 30 years, a lot of people still confuse our services with those of skilled nursing or assisted living facilities.

But we are very different -- and for many families -- very vital to the entire family's well-being. As a day care center, we allow families to continue to all live under one roof. And as a health care center, we continue to monitor and medicate loved ones as needed during daytime hours they are at our centers. This gives caregivers additional peace of mind, knowing their spouse or parent's medical needs are met as well as their emotional, psychological and physical needs while they work or run errands.

As many of our readers know, the state has had to cut back on its support in the past couple of years, and now it is weighing whether to eliminate funding entirely, then restructure ADHC. There's an interesting piece in an online publication produced by The Pew Center for The States on the impact if the state of California pulls funding for Adult Day Health Care Centers.  Consider this passage:

Without Medicaid funding — $170 million from the state, plus an equal amount from the federal government — most of the centers will find it difficult to stay open. The 39,000 elders and adults with disabilities who spend their days at the centers — receiving medical treatment for chronic diseases, as well as mental health counseling and physical therapy — will have to find somewhere else to go.

The state says it will find other Medicaid services for the patients, but elder advocates say there are no other facilities that provide the same kind of care. Many patients will end up calling emergency medical services, going to emergency rooms and getting admitted and re-admitted to hospitals. Some will go directly to nursing homes. Instead of paying $76 per day for adult health care, the state will have to reimburse nursing homes at a rate of $200 per day.

‘The Single Most Important Step’ for Family Caregivers

During a webinar yesterday on making the most of respite care, the speaker proclaimed that taking time off from caring for a loved one is “the single most important step family caregivers can take.” And yet, so many caregivers – particularly spouses and parents of disabled children – do not take time off to do something they enjoy.

Part of that is cultural. According to speaker Dale Lund, a professor of sociology at Cal State University San Bernardino who’s conducted caregiver research since 1983, research shows we as a society accept that widowhood is among the most demanding experiences in life, while caregiving is not. And yet the two share a lot of traits in common, including depression, isolation, financial stress and sense of loss.

As such, caregivers of the disabled often feel guilty if they take time for themselves or try activities that do not involve everyone in the family. And those who do seek respite care often do not otpimally use the time off, generating even more stress!

According to Dr. Lund, here are some ways caregivers can effectively use respite care, whether it’s being relieved for a couple of hours at home or by enrolling their loved on in adult day care programs such as those offered by our organization. (We were founded by George and Joy Glenner to specifically provide respite care for caregivers of dementia patients.)

1. Begin using respite care early in the “caregiving career.” Caregivers with jobs outside the home are more likely to be satisifed with respite care because they use it to work. However, those who stay at home to be full-time caregivers do not see their roles as "work" and therefore are more resistant to outside help.  The earlier respite care is arranged, the better it is for everyone in the family.

2. Use respite care regularly. Research indicates scheduling outside care twice weekly is a good starting point. It can be for just a couple of hours or a couple of days. What’s important is that it’s consistently used.

3. Use respite care in sufficient amounts. Start with two-hour blocks to acclimate and plan activities that can be done during that amount of time. It’s important these be activities that bring the caregiver enjoyment – whether it’s leisurely grocery shopping or taking a much-needed nap. Increase the “dosage” as caregiving responsibilities evolve.

4. Use respite care alongside other services. Consider using some of that spare time to become better educated in caregiving through classes, support groups and counseling. Or, visit the gym or a park or museum. Don't just sit in front of the television, worrying about your loved one.

5. Be careful about volunteering. Caregivers by nature are giving people, and some friends and family members may take advantage of that generosity by requesting help when they know the caregiver is free. For some, volunteering provides a great deal of satisfaction; however, if helping out feels burdensome, let someone else with a different lifestyle and more free time take on those tasks.

Dr. Lund recommends caregivers set weekly goals for how they will spend their respite time and then check at the end of the week to see if those goals were accomplished. Do you feel more rested? Did you catch up on all of your errands that had been weighing on you? Did you get to read a good book or take in a movie you’ve wanted to see? If your respite time was done well, the answer to all of these questions will be a big, “YES!”

When Is Poor Caregiving Criminal?

Photo courtesy of The Los Angeles Times Web site

As a family service, our organization not only provides adult day health care for those with memory impairment, but we also are an expert resource for those trying to manage the often overwhelming responsibilities that come with caring for someone with dementia.

Family members often are at odds with options for how best to handle Mom or Dad's growing physical and medical needs (as we use Mom or Dad because increasingly -- and ultimately -- it's the adult children, nieces, nephews and grandchildren who bear the responsibilility). Some deny a situation has progressed to the point of intervention; others are desperate for help.

That combination appears to have been at play in the case of a young woman who was caring for an elderly great-aunt with dementia that refused to see doctors or be placed in a facility. They lived in a rural community in California where presumably fewer resources exist, but at some point the elderly aunt's body began to fail her, much as her mind had. When she died, she weighed a mere 35 pounds and was riddled with painful bedsores. First responders said the tiny home reeked of urine and feces from improperly disposed diapers.

The caregiver, now 26, was charged with murder for failing to take the necessary steps to keep her aunt alive. She was jailed and her 4-year-old daughter taken. Her attorneys claimed the elderly aunt, 91, died of natural causes and that the bedsores was the skin organ failing after the woman's weight had dropped to an unsustainable state.

So often the stories of criminal charges brought against caregivers involve more obvious signs of elder abuse, but this stands out as different. The young woman, who apparently lacked much family support up to and including her trial, tried to honor her aunt's wishes, even if they killed her.

The article notes that cases such as these are likely to rise as more adult children try to honor parents' wishes to stay at home as their mental and physical health declines. We at The George G. Glenner Alzheimer's Family Centers work with caregivers to help them make the best choices for everyone in the family. We provide a plethora of possible resources and peer support as they work through difficult decisions.

If you are a caregiver in San Diego and feel overwhelmed by the duties now demanded of you, adult day health care may be a great option. And if it isn't what you're seeking, our staff is available to help you find a solution that is.

Los Angeles Times: Death of 91-Year-Old Spotlights Lines Between Caring and Killing

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