Important New Website: LTCfocUS.org

Today's guest post is from Denise Tyler, PhD, of Brown University's Center for Gerontology & Health Care Research. The LTCfocUS website she writes about contains an invaluable tool that allows the user to input variables such as resident demographics and facility staffing, and creates maps and tables of nursing homes in the US based on these factors. While the main purpose is to provide vital information for shaping healthcare policy, I can see other uses as well. For example, perhaps a family is looking for a nursing home with a good record in preventing urinary tract infections, to which their elderly mother is prone. The answer is a few mouse clicks away.

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Millions of Americans live in nursing homes and millions more receive short-term care from one after a hospital stay. But the current healthcare reform debate has largely ignored nursing home care.

This is due, in part, to a lack of data about how and why that care is given.

As we move ahead with health care reform, we must understand how nursing homes are being utilized, what kinds of patients live in them, and what the outcomes are for the people who rely on them for care.

This matters because healthcare reform will likely be paid for in large part, by reductions in current healthcare spending. And the majority of these reductions will come from the Medicare program and nursing homes will likely be the target of these spending reductions.

Until now, there has been no resource for accessing information about nursing homes and those they care for. A new Web site that provides this information for the first time, www.LTCfocUS.org, has been developed by the Center for Gerontology and Healthcare Research at Brown University.

LTCfocUS.org hosts data regarding the health and status of nursing home residents, characteristics of care facilities, and state policies relevant to long term care services and financing. The Web site allows policy makers and researchers to trace clear relationships between state policies and local market forces and the quality of nursing home care. What’s more, www.LTCfocUS.org also provides information gathered from a variety of sources, which makes it useful to answer research and policy relevant questions that could not previously have been answered. For example, the Web site can be used to determine which nursing homes are providing greater proportions of Medicare services or examine the growth in Medicare services in nursing homes over time.

The Web site contains data about nursing home resident health, with specific information covering areas including incontinence, or the number of patients who are on anti-depressants or have high blood pressure. Users can also learn about the size of nursing home facilities, whether they are for profit or non-profit or affiliated with a chain. Do you want to know how full these facilities are? Our Web site can also help with this information.

The system now in place can also inform about local market condition and competition, the Medicare Managed Care market penetration rate, and state policies regarding Medicaid spending on nursing homes.

In addition, because the Web site provides several years of data, it is possible to examine trends over time and determine how changes in nursing home policy or financing have affected nursing homes and their residents from year to year. This information will be important for deciding which policies and financing schemes improve care and save money, some of the primary goals of healthcare reform.

Why is this information necessary? It matters in the bigger picture, for both health care and health care reform.

Health care reform will spur many changes and it is critical that these changes be evidence-based, and not dependent on politics. LTCfocUS.org is a new resource that will be vital to building this evidence base regarding nursing home care.

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The author, Denise Tyler, Ph.D., is an Investigator in the Center for Gerontology & Health Care Research at Brown University. She’s project manager for the Shaping Long-Term Care in America Project, a five-year, $10 million project funded by the National Institute on Aging that aims to improve nursing home care in the US by examining how market factors and state policies affect the quality of care delivered in the country’s 15,000+ nursing homes. LTCfocUS.org is a product of this project.

Creative Nursing Home Holidays

The holidays can be a difficult time of year, especially for residents in nursing homes. Many residents once hosted family gatherings, or were regulars at a holiday event, but now their physical disability complicates their participation in familiar rituals. Last year I wrote a post on this topic from the residents' point of view, 'Twas the Week Before Christmas.... This year I'm hoping to gather creative ways family members have come together to celebrate the holidays with their loved ones, despite the challenges of physical limitations. Here I offer a few suggestions, and hope you'll add your ideas and experiences to the Comments section below.

A few years ago, my Aunt Bevy wasn't feeling well enough to join us for our annual family gathering, so my cousins and I stopped by with leftovers and a quiet chat after the festivities. I know she appreciated that visit, especially since it was the first time she'd ever missed our party.

Most residents would like to be at the home of a family member to celebrate the season, but once they're in the nursing home, it's not as simple as picking them up at the door. With some advance planning, the physicians can write out the home pass orders, and the nurses can gather the necessary medications and provide instructions so loved ones can spend a few hours with the family.

If the holidays will be spent in a home that's not wheelchair accessible, the family could gather for a separate meal in an accessible restaurant, or some members could join the resident for dinner at the nursing home.

If a resident is on a special diet, such as puree, for example, a variety of pureed soups and puddings could be offered, as recommended by the dietary department.

I once knew a man who wasn't able to eat and was on a tube feed. At Thanksgiving, he and his children gathered at the nursing home for a gratitude ceremony, sharing aloud the things they were grateful for that year, and the qualities they treasured in each other. It wasn't the Thanksgiving everyone was used to, but they'd created a ritual that fit for their new circumstances.

How to Create Nursing Home Family Councils

In Part One of the Family Council posts, Karlin Mbah of FRIA discusses the role of the Family Council in improving the nursing home environment. In today's follow-up post, she addresses ways in which to organize families to create a Family Council. In addition to her suggestions, some of the tips I provided in my posts on Resident Council Meetings can be adapted for connecting with potentially interested families.

Overcoming Challenges to Family Council Organizing

The most frequent question asked by Family Councils is: how do we get more members?

Recruiting and maintaining members seems to be one of the biggest challenges to Family Council organization. First and foremost, it is important for Family Councils to realize that you do not need mass numbers to be successful! A Family Council of 4-5 can often make a big difference. Additionally, arranging Family Council meetings at a time families can easily attend and conducting well-run, focused meetings often helps increase numbers.

Family Councils often spring up when a major issue occurs and then die down when the concern is resolved. Finding positive projects to keep Family Councils running when no major concerns are present will help keep the momentum going and show the nursing home that the Council is dedicated to a positive growing relationship. Some Family Councils achieve this by conducting educational forums on long term care; others have activities such as picnics and entertainment.

A second major challenge to overcome is resistance on the part of the nursing home administration.

Family Councils can address administrative resistance in several ways. From the beginning, in talking with the administration, emphasize the supportive, constructive role Councils can play. Look for concrete ways to be helpful and connect personally with staff. Effective Family Councils walk a fine line between sometimes cooperating with administration, and taking a strong, independent stand at other times.

Where to Get Help

FRIA and many other citizens’ advocacy groups help Family Councils organize in nursing homes in their respective states. FRIA also has published a Family Council Manual and Tool Kit: A Guide to Creating and Sustaining Effective Nursing Home Family Councils.

For information on Citizen Advocacy Groups in your State go to the NCCNHR website. (NCCNHR, formerly the National Citizens' Coalition for Nursing Home Reform, is the national umbrella group of all long term care citizens’ advocacy groups).

Additionally, your local ombudsman can assist with Family Council formation. (The Ombudsman is the federally mandated nursing home advocate. Your nursing home is responsible for posting the name and number of your ombudsman in the nursing home).

Finally, you can seek out help by asking other well-established councils to mentor your group or getting assistance for a community organizing group such as a union or a non-profit.

Photo Gifts for Nursing Home Residents

In my post, What I Want My Nursing Home Room to Look Like, I mention I'd like to have family pictures in my room. Actually, I'd like everyone to have family photos in their nursing home rooms, in addition to photos of themselves when they were young. Before I started in long-term care (I was working at the state psychiatric hospital at the time) and Grandma Lily was in a nursing home, I bought a multi-photo frame, inserted pictures of the family, and hung it on her wall. It transformed the previously anonymous space and I felt happy to see her surrounded by loved ones whenever I came to visit. Pictures and memorabilia tell the story of someone's life and remind everyone who the person is. They're the single most homey addition to a room and they last longer than flowers. I'll be talking more about the holidays as they approach, but if you're wondering what to get a nursing home resident, photos are an excellent gift.

Dale Carter, (Transition Aging Parents), told me about Beak Design Studio, a website by Hiromi Walleser, who creates portfolio posters especially designed for residents.

My parents were thrilled with their 50th wedding anniversary gift of a photoscope created by the talented Sue Samek of Photoscope Gifts. Sue creates one-of-a-kind artwork from your photos.

Here's a photoscope of Sue's family, and a detail of the work. She also creates photoscopes for hobbyists (cat lovers, gardeners, etc), travel buffs (a great idea for vacation photos), and any series of photos you can imagine.

FRIA on Nursing Home Family Councils

Today, guest poster Karlin Mbah, of the New York-based organization Friends and Relatives of the Institutionalized Aged, explains what Family Councils are and how they can work with nursing homes to improve care for the residents. In a later post, she'll discuss ways to create a successful family council.

Background on FRIA and Karlin Mbah:

FRIA: The Voice and Resource for Quality Long Term Care is a not-for-profit organization dedicated to fostering the dignity and independence of seniors in long term care settings, with a special focus on nursing home residents, and to ensuring that they receive prompt, high quality compassionate care. We seek to accomplish this by helping friends and relatives become more informed and effective caregivers for the needs of their loved ones.

Karlin Mbah is the Family Council Coordinator and Policy Advocate for FRIA. As the Family Council Coordinator, Ms. Mbah provides technical support and assistance to Family Councils in the New York City greater metropolitan area.

Currently FRIA conducts quarterly “Advocates of Nursing Home Reform” (ANHR) meetings at which Family Council members and leaders from all over the City meet to discuss issues and projects in their nursing homes. FRIA will also be assisting ANHR members in publishing a quarterly newsletter, by and for Family Councils, which will begin distribution in 2010.

Ms. Mbah also works on FRIA’s free telephone helpline (212-732-4455) which is open M-F 10AM-5PM to answer your questions about long term care.

Parts of this blog contribution were taken from FRIA’s Family Council Manual and Tool Kit by Jean Murphy and Jessica Herold.

Family Councils:

What is a Family Council?

Family Councils can play a very important role in helping residents of a nursing home have good quality of care and quality of life. A typical Family Council is a group of committed families and friends of nursing home residents who work together to improve the quality of life for all residents in a particular facility. For simplicity, I will refer to Family Councils and their members as families, but friends, partners, significant others, and all regular caregivers participate equally in Family Councils and are included when I refer to “families.”

Family Councils have the right to organize under the law. Under Federal Law, the 1987 Nursing Home Reform Act (OBRA ’97) recognizes that families are an important part of a nursing home community and serve as advocates for good care. The Act guarantees families of nursing home residents the right to meet together in a facility, and to be provided with space, privacy and staff assistance, if sought. Administrators are required to listen to, and act upon, the recommendations and grievances of Family Councils. Several States, including New York, have strengthened and empowered Family Councils by enacting laws that give additional rights and protections to councils, beyond those provided by federal law.

What Do Family Councils Do?

Family Councils bring about positive change in nursing homes. The structure and activities of councils vary greatly, depending on their membership and the issues they decide to address. Some typical Family Council activities include:

· Welcoming new families and friends to the nursing home

· Offering support to each other

· Raising concerns and complaints and working to resolve them

· Providing education and information

· Improving communications with the home

· Arranging joint activities for families, friends and residents

· Recognizing staff for good work

· Connecting to community resources

· Speaking out on public issues

· Taking the lead in bringing new models of long term care to their communities, such as person centered care, also known as Culture Change.

Family Councils allow a venue for families to address their concerns in a safe setting and get support for the resolution of these concerns. Nursing home staff attend Family Council meetings by invitation only and must respond to recommendations and grievances presented by the council. These recommendations and concerns can be made in the name of the group, thus providing anonymity to individuals and a united front of families working for better care.

Therapeutic Use of the Internet in Nursing Homes

A recent study by the Phoenix Center looked at adults 55 and over, but not employed or in nursing homes, and found that Internet use decreased their level of depression by 20%. I'm not at all surprised by this, and I believe a similar decrease in depression levels would be observed in nursing home residents as well.

While residents are living together rather than isolated in their own homes, and therefore have more opportunities for socialization, there are still many people who don't partake of the recreational activities offered for their enjoyment. Some residents never leave their rooms due to physical or psychological barriers, and some don't like crowds. Other residents feel uncomfortable socializing because of the physical changes of illness, wish to pursue activities other than those available in the nursing home, or miss connecting with those outside the home. The Internet offers the opportunity for nursing home residents to transcend their physical illnesses, leave the boundaries of the facility, and connect with the world.

In an earlier post, I shared ways in which I use the Internet for therapeutic purposes, and I believe they're worth repeating here:

1. Psychoeducation Regarding Illness:

Often residents are given diagnoses, but little information about them, leaving them confused or upset, which can result in noncompliance with medication and care. I search for a resident’s illness with them on the computer, and discuss the symptoms and treatment, which enhances cooperation with medical staff. Some residents are more receptive to information coming from a “neutral” source than from their own caregivers, and most residents appreciate a print-out of information they can refer to over time. Posting a list of illnesses and the Web addresses of important sites near the computer would facilitate this process (eg; The American Diabetes Association, the Amputee Coalition of America, etc).

2. Support Regarding Illness:

Most of the residents deal with their illnesses in isolation, when there are many avenues of support available to them on the Internet. Having the opportunity to “discuss” their concerns anonymously with peers can often be more effective than trying to generate a conversation between two or more residents at the nursing home, due to discomfort at revealing personal information. At strokenetwork.org, for example, stroke survivors can “meet” other survivors on-line and get information and emotional support, as can their caregivers. To find the appropriate support groups, enter the name of a particular illness and “support” into the browser window and look around from there. Another option: Look for a Yahoo group about the illness and sign up the resident after establishing a free email account through resources such as Yahoo or Google.

3. Connection with Family and Friends:

Why should residents have to limit themselves to family visits or phone calls when most of the rest of the country is communicating via email, Twitter, or a social networking site such as Facebook or MySpace? I’ve established email accounts for octogenarians to help them keep up with the grands, and a free Facebook page would accomplish the same thing with a bit more zing.

4. Reminiscence:

I once worked with a terminally ill 88-year old man who’d left Barbados in his thirties and had never realized his dream of seeing his country again. Imagine his expression as I entered “Barbados” into Google Images and up popped photos of the country he thought he’d never be able to see again. This intervention generated a flood of memories and a profound sense of relief and closure. Reminiscence could also be conducted in a group format, with connection to a large screen, so that residents should share with others information about their home countries or hometowns.

5. People Search:

One of my favorite things to do with residents on-line is to find their long-lost friends and relatives. For example, through the Internet white pages, I helped one extremely lonely and depressed resident find a friend with whom he lost touch sixty years ago. They are now enjoying an exchange of letters and photos, and my patient has something else upon which to focus besides his poor health and lack of visitors.

6. Fun & Miscellany:

Acting under the theory that doing something enjoyable will begin the upward spiral out of depression, I’ve occasionally brought a resident to the computer to listen to their kind of music (try shoutcast.com), to check out the latest fashions, or to see photos of famous movie stars (Google Images). Once a 97-year old Panamanian resident told me she’d felt unattractive all her life because she thought her lips were too big. “Oh, no,” I told her, “your lips are considered beautiful and the height of fashion.” She believed me after I clicked on Google Image photos of Angelina Jolie.

Do you have more therapeutic uses of the Internet? Please add them to the Comments section.

Living Wills and Other Advance Directives

One of our dear cats is very sick. This prompted a family discussion about how much care to provide him, and led to a talk about our own wishes should we become ill.

I recently read a post on WiseHands, a massage therapy and hospice blog, about how working with people who are dying can change the way we feel about death. Part of my job as a nursing home psychologist is to help people prepare for death, and it took time for me to grow comfortable with this. I find my patients usually welcome the opportunity to discuss treatment decisions and dying, but sometimes it takes several attempts before they are fully ready to talk about it. I imagine it would be the same for family members trying to have similar conversations.

The CBS News article, Some Nursing Home Elderly Get Futile Care, emphasizes the importance of having end-of-life discussions. For those interested in preparing living wills and advance directives, the Mayo Clinic has an informative website to get you started.