“We were thrilled to learn about so many innovative, diverse, and effective community programs around the country that support and educate family caregivers,” said Gail Gibson Hunt, President & CEO, National Alliance for Caregiving. “The support these programs provide to caregivers is so critical, especially during these difficult economic times when the time and expense of caregiving are so challenging for many caregivers. These programs serve as models for other communities.”

This year’s award winners are:

• Alzheimer’s Association, Central and Western Virginia Chapter in Charlottesville, VA, for its Connections: An Innovative Home Based Activity Program. The program provides caregivers with strategies needed to interact positively with an individual diagnosed with dementia and connect families to a full range of community services leading to increased caregiver confidence and support.
• Fox GERI: Geriatric Education & Research Institute of Cherry Hill, NJ, for Translation of ESP/Skills2Care, a collaborative project that involves an evidence-based program for caregivers of people with dementia that provides occupational therapy in a sustainable reimbursement environment.
• Interfaith Care Partners of Houston, TX, for its Care Team Program, a team of congregation-based volunteers who are trained and supervised to provide respite to caregivers and to forge relationships with cognitively or physically impaired persons in the family home or through activity programs at partner congregations.
• Multicultural Community Services of the Pioneer Valley of Springfield, MA, for its Parent Advocacy Group, a support group for single, older parents who provide friendship, support, hope and solutions to each other as they advocate for sons and daughters with intellectual challenges.
• New York University (NYU) Langone School of Medicine of New York, NY, for its NYU Caregiver Intervention program. This is an evidence-based intervention to improve the well-being of caregivers of those with Alzheimer’s disease by mobilizing the support of naturally existing family networks, improving caregiving skills, and providing the opportunity for ongoing counseling and support.
• Partners in Care, Inc. of Pasadena, MD, for Ride Partners and Repairs with Care, which empowers older adults to remain independent in their own homes through a time-exchange network. This network provides assistance to older adults and caregivers for neighborly tasks, such as transportation and household repairs.
• Senior Services of Albany of Albany, NY, for Telephone Support Groups, which enhance the effectiveness, accessibility, and reach of a mainstay of caregiver support—the support group—by delivering an evidence-based program to family caregivers who are connected by telephone conference call.
• The Kennedy Center, Inc. of Trumbull, CT, for its Caring for the Caregiver program, which, unlike traditional caregiver programs, helps adult caregivers with cognitive disabilities who provide assistance to parents over the age of 60.  This program was also honored with the Cultural Diversity Recognition Award.
• Weill Cornell Medical College of New York, NY, for ThisCaringHome.org, a new, interactive, multi-media Web site that offers caregivers innovative ways to learn research-based strategies that reduce caregiver stress and enhance the safety and well-being of loved ones with Alzheimer’s disease or other types of dementia. This award winner was also honored with the Alzheimer’s Recognition Award.

One program received an honorable mention award: Alzheimer’s Day Services of Memphis, Inc. of Memphis, TN for its Male Caregivers Cooking Program. This program teaches male caregivers ways to overcome the challenge of providing nutritious meals for a spouse or significant other with Alzheimer’s disease or related disorders.

The non-profit honorees were awarded $20,000 to continue and enhance their support for caregivers. To win the award, non-profit organizations from around the country competed in the categories of caregiver support and education, either as a small community (with a population of 100,000 or fewer) or a large community (100,001 or more. Applicants were asked to demonstrate how they are innovative, effective and replicable based on research and their response to diverse populations. Applicants were then judged by a panel of experts on caregiving who selected the nine award-winning programs.  Two awards were given to organizations meeting the needs of caregivers of adult children with disabilities.

“We are pleased to recognize these programs for the important contributions they’re making to family caregiving,” said Dennis White, President and CEO of MetLife Foundation. “These organizations provide innovative examples that other nonprofits can draw upon to support the efforts of family caregivers.”

Family caregiving has a value to society estimated at $375 billion per year—more than the value of home care and nursing care combined. At least 65 million adults provide critical care that helps friends and loved ones with debilitating illnesses remain in their homes and other community settings. An estimated 80% of all care received by older Americans is provided by family members – spouses, children, grandchildren and other relatives. Nearly 60% of caregivers are employed and nearly 40% of caregivers have children under the age of 18. Managing the competing priorities of work and family, in addition to caregiving, is stressful and costly and can exact a heavy toll, resulting in burn-out and health problems. Experts anticipate that family caregiving will grow in the decades ahead.

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Joni shared the following book and products recommendations:

—”Keep Your Brain Alive” by Lawrence C. Katz, Ph.D. & Manning Rubin features 83 “Neurobic” activities to help prevent memory loss and increase brain activity.

—”Sherlock,” a memory card game, is recommended for persons ages five to 99+.

—”Juggling Scarfs” provides a mild cardio activity while stimulating the growth of grey matter. This would be a great activity for children to enjoy with your caree.

–”Pantago” sounds like a game in which my nieces and nephews would kick my butt. Joni did give us permission to cheat when we first learn this one.

–Smartmouth” is a word game that would be fun for the entire family.

The recommended games and activities are all priced under $25. While we’re lucky to have four store locations in the  Chicago area, the website offers all the products available in the stores, as well as the ones mentioned above. You also can email a brain coach for help in choosing a game or activity that will be appropriate for your caree.

Our show ended with a suggestion from Joni as to how we can keep our brain in good shape: Try something new every day, even if only brushing your teeth with you non-dominant hand.

Have fun! And, if you purchase a game, let us know which one and what your caree thinks!

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Some suggestions we discussed during the show include:

1. Move–exercise can help you both feel better. Consider the Sit and Be Fit exercise videos; visit here for more information. And, Wii Fit brings the bowling alley to your living room.

2. Consider a trip to a local museum. Call ahead to ask staff for suggestions and ideas to make the visit a pleasant one for you and your caree. Learn more from the MoMA Alzheimer’s Project; New York City’s Museum of Modern Art created a program for persons with Alzheimer’s disease.

3. Organize a closet, drawers or photos. When you organize photos, be sure to tell their story–who, when, why.

4. Get handy–knit, bake cookies (send me a few so I can sample), string beads. Puzzles and crosswords can be a great joint activity. See Memory Jogging Puzzles, made specifically for those with dementia.

5. Consider buying a baby doll, which can be soothing and engaging, for persons in mid to late stages of Alzheimer’s. The Alzheimer’s Store has a selection of dolls and other activity ideas.

What activity ideas do you enjoy with your caree? Please share in our comments section.

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The basis of my question is this: How do you coax a very headstrong someone who’s aging, has Alzheimer’s and can no longer take care of themselves into a nursing home? Details below.

A couple of years ago my mother was forced to move in with her mother as it was thought my grandma had a terminal disease. This was difficult, especially for my mom, who has never been close to her mother. They bicker and fight about everything, like my grandmother’s unwillingness to take a bath or asking my mom questions over and over. My mom goes ballistic and while I tell her she should try and ignore these things, she seems incapable. My mom goes to a support group consisting of others in similar situations, but she doesn’t have a clue about resources or her rights as a caregiver and my grandmother’s power of attorney appointee.

A couple of years have passed and it turns out that my grandmother, who’s 90, doesn’t have the disease she was diagnosed with. So my mom feels like she got a “life sentence” – my grandmother’s condition has actually been improving, no doubt with some help from my mom who cooks her healthy food, etc. To complicate matters, Alzheimer’s is slowly but surely descending on my grandmother and, as she’s a very egotistical and headstrong personality, she’s in denial about it (which I’ve heard is typical).

Now I guess she’s exhibiting what they call “sundowner’s” as she becomes incredibly active and alert at night and wants to search for her checkbook in the garage in the middle of the night, even if it means going out on an icy sidewalk to get there. My mom can’t get any sleep with grandma roaming around. Last year she tripped over her oxygen tube and fell on her hand, which she can no longer use and which can’t be operated on.

My grandmother absolutely refuses to be put in a nursing home and has even walked out of one after she had broken her hand.

This situation is killing my mom. I’m going to visit home in a couple of weeks and she’s expecting me to help her get my grandma into a home. It sounds impossible.

Grandma will likely “disown” us as she has threatened to do so many times in the past. But we may have to take that chance.

Any suggestions/strategies/resources are welcome!

Hello,

What an incredibly upsetting and stressful situation for all of you! Consider this a process of several steps, concentrating on one step at a time.

First, it’s critical that your grandmother get to a geriatrician who can offer a correct diagnosis. Call the Area Agency on Aging at 1-800-677-1116; the staff can provide a list of geriatricians in your mom’s area. Check with your mom about availability, then make an appointment for your grandmother during your trip home. Plan on all three of you attending the appointment. The geriatrician and his/her staff can help you and your mom determine the best place for your grandmother.

Second, call the Alzheimer’s Association hotline at 1-800-272-3900 and explain your situation. Ask for guidance that you can offer your mom. Then, share what you’ve learned, as well as the hotline number, with your mom; encourage her to call as often as she needs. Another assocation, Alzheimer’s Foundation of America, has a hotline that’s another terrific resource for your mom: 1-866-AFA-8484.

Third, consider hiring a geriatric care manager who can visit your mom and your grandmother in their home during the next few days. The geriatric care manager can assess the situation and make recommendations to both you and your mom. Be sure to ask the care manager to call you after meeting with your mom and your grandmother. You’ll want to be able to ask her questions about the situation and gather information about her recommendations about services and programs that can help.  You also can learn more about a geriatric care manager (as well as search for one in your mom’s area) here: www.caremanager.org. The care manager also can help sort through the other important components of your grandmother’s care, including power of attorney.

If at any time during your process, you run into a brick wall, ask for suggestions on who else can help you.

Finally, this situation is about what’s best for your grandmother and your mother. Is your grandmother safe in at home? Is your mom able to manage the difficult and demanding care needs of an older adult? It’s imperative to think about this situation objectively. Your grandmother’s threats are threats from someone who is not well. Let your knowledge of what truly is best for her be your only guide. Your grandmother may seem to be impossible, but the situation is not. Be steadfast in your belief that you are taking the right actions and making the right decisions–because you
are.

Hope this helps!

Family caregivers ask Denise M. Brown, Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.

If you or your care recipient are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.

Products made specifically to occupy a care recipient so a family caregiver can get a break are available from several companies, among them:

Collector’s Choice Music: Purchase your care recipient’s favorite music, including Big Band, classical/opera and soundtracks. Also available are old radio shows. Visit www.ccmusic.com or call 800-993-6344.

Innovative Caregiving Resources: Researchers from the Gerontology Center at the University of Utah concluded that video respites work-and developed their own series as result. The videos are now available through an unrelated company, Innovative Caregiving Resources. Videos cater to a wide range of care recipients; in “Ladies…Let’s Chat” female care recipients will enjoy a visit with Diane and her  grandchildren and in  “Lunchbreak with Tony” male care recipients take a lunch break and discuss first cars and stick ball.  Other videos are geared toward specific ethnicities (Hispanic, African Americans, Jewish) and toward holidays, such as Christmas. For more information, visit www.videorespite.com or call 1-800-249-5600 .

NASCO: Its online catalog, at http://www.enasco.com/senioractivities/, features products to captivate your care recipient. You’ll products for persons with Alzheimer’s, as well as puzzles, games, sing-a-long videos and arts and crafts. You’ll want to peruse this company’s catalog and/or web site; it offers great ideas on how to keep you care recipient occupied with meaningful activites. Call for catalog: 800-558-9595.

Alzheimer’s Store: You’ll find products that keep your care recipient occupied and safe. Products are categorized by stages (Early Stage, Middle Stage and Later Stage), wandering, safety, forgetfullness. Visit www.alzstore.com or call 800-752-3238.

If we’ve missed any resources, please be sure to share!

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Watch and then let us know what you think:

Price rollbacks throughout the U.S. economy during the past year did not apply to long-term care service providers, according to the 2009 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs. 

Private room nursing home rates rose 3.3% to $219 per day or $79,935 per year, while assisted living also rose 3.3% on average to $3,131 per month. Home health care aides now cost an average of $21 per hour, a 5% increase; adult day services run $67 per day, a 4.7% increase.

2009 City/State Highs and Lows
For nursing homes, the highest costs for a private room were reported in Alaska ($584/day) while the lowest were in Louisiana, Rest of State ($132/day). Assisted Living costs were highest in Wilmington, Delaware ($5,219/month) and lowest in North Dakota ($2,041/month). The highest Home Health Care Aide rates were $30 per hour in the Rochester, Minnesota area, while the lowest were reported in the Shreveport, Louisiana area at $13 per hour. Adult Day Services were highest in Vermont at $150 per day and lowest in Montgomery, Alabama at $27 per day.

2009 Average National Rates
The study, which groups Assisted Living Communities into three categories—”basic” (five or fewer services), “standard” (six to nine services) and “inclusive” (10 or more services)—notes differences from 2008 in the number of communities in each category.

More are classified in the middle “standard” range and fewer in the “basic” category.

Communities in the “standard” category include more services in their base rates, but, on average, also have higher base rates. The study also found that those who enter an Assisted Living Community with Alzheimer’s disease, or those who develop Alzheimer’s later, can expect to pay more for that care, with an average monthly cost of $4,435.

“These across-the-board increases may be surprising to many given the economy over the past year,” said Sandra Timmermann, Ed.D, director of the MetLife Mature Market Institute. ”But, while the Consumer Price Index (CPI) decreased overall during the past year, costs for medical care are 3.3% higher, which parallels our findings on long-term care. The change in pricing methods at some assisted living communities may be another factor, a warning to consumers to carefully compare prices at all long-term care service facilities by considering both the base price and the add-ins for additional services.”

Additional Long-Term Care Facts
About three-quarters (73%) of the home health care agencies surveyed provide Alzheimer’s training to their employees, and almost all (98%) agencies surveyed do not charge an additional fee for patients with Alzheimer’s. About one-quarter (27%) of the home health care agencies surveyed have a 24-hour or live-in rate. The average capacity at adult day service centers is 44. The average client-to-staff ratio is 6:1 with a maximum of 20:1.

The 2009 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs can be downloaded from www.maturemarketinstitute.com under “What’s New.”  It can also be ordered by e-mailing maturemarketinstitute@metlife.com, or by writing to: MetLife Mature Market Institute, 57 Greens Farms Road, Westport, CT 06880.

I wish there was a way of getting something which would let us know when my grandmother gets up from a nap or in the morning. For instance this morning, she got up before any of us were up, and tried to go outside on her own. My brother leaves very early in the morning, and I don’t want the alarm to go off and wake everyone else up. Do you happen to know if there’s something that would just alert us with her? We were thinking of getting a baby monitor.

Hello,

A few suggestions for you:

–I helped some friends care for a stroke patient (Evie). We used a baby monitor to monitor her while she was sleeping. And, to make sure we heard her when she got up from bed, we tied small bells to her slippers. This worked because she always put her slippers on before getting out of bed. This a low-tech option.

–Alzheimer’s Store has a motion detector with an alarm; you can learn more here. The store has other products you might find helpful, including a bed pad wireless remote alarms. Look under “Safety” at http://www.alzstore.com

–AMeds also has a floor mat alarm system. They also sell one for chairs.

–If you haven’t already, you can register her with the Alzheimer’s Association Safe Return program; click here for  details.

You also can check with your local durable medical supply companies to see if they carry these products. If they do, you can visit the store to see. Medicare has a directory to find stores near you here.

(Editor’s Note: On a regular basis, we invite health care professionals and family caregivers to write a guest blog. Today’s guest post is written by Paula Farris, a family caregiver, who offers tips on managing  your care recipient’s hospitalization.)

For a person with dementia symptoms being hospitalized is challenging. In addition to the condition that caused the hospitalization, the caregiver and the hospital staff will also need to address the dementia symptoms.

Emergency Room Wait Times
Whether the dementia patient arrives by ambulance, is brought in by a concerned friend or family member, or is told to go there by her primary care physician, the destination is still the same—a crowded emergency waiting room.  Long waits can be hard for anyone, but for a dementia patient, especially one who is sick or injured, they can become unbearable.

Your mom may not understand why she is there.  If she is in pain or feels ill she will want the comfort of her own home.  It is possible that she will sit quietly and not complain, but don’t count on it, at least not for long.

If you explain to her why you are waiting and why it is important for her to see a doctor as soon as possible, she may not understand you or believe you. And she most certainly will soon forget your explanation.

It may help to inform the staff in charge of her case of her dementia diagnosis. This may give her some priority over other patients. Stay calm when talking with the hospital staff even if you have already been waiting for quite a while. A gentle reminder that your mother needs her pain medication or that she is becoming agitated may move things along more quickly.

To distract my mother while waiting for her to be seen, I would call one of my sisters on my cell phone and let her babble on for hours. This helped her to stay calm.

Strange Doctors
Even if your care recipient’s primary care physician (PCP) told you to take your mom to the emergency room, or if he is the one who had her admitted, you will probably not see the PCP while she is in the hospital.  Most PCPs do not make hospital rounds, but rather they leave that up to the specialists assigned to the patient’s case.

Unfamiliar surroundings and strangers can make a dementia patient even more anxious. If your care recipient has an ongoing medical condition ask the hospital to contact the specialist(s) she usually sees. This may not ease her mind much since she may not recognize this physician, but it will make your communication with him easier.

If your mom is assigned a doctor she has not seen before then be sure to write down his name, office contact information, specialty, and the hours he usually does his rounds.  He may be reluctant to give you his office contact info saying that you can leave a message at the nurses’ station if you need to speak with him, but I would push him for it anyway.  Leaving an important message with a staff member who works specifically for that doctor can be much more efficient than leaving a message with an over-worked nursing staff at the hospital.

The Dementia Patient Needs an Advocate
If you are the only caregiver, you may be in for a long stay. Many sources recommend that a patient never be left alone when they are hospitalized. This is especially important for a dementia patient. A dementia patient lacks the ability to ask proper questions and to understand instructions. She needs someone to be her advocate.

Enlist the help of friends and family members to stay 24/7 in the hospital room. Be sure that they are familiar with your mom’s normal symptoms and what she can be expected to act like in the hospital.

Leave a notepad and several pens in the room for the caregiver to write down everything that happens to the patient. Designate a section in the notebook for questions and answers.  If one caregiver has a question for the doctor they can write it down. If they aren’t there when physician shows up, the caregiver on duty can ask the questions and write down the answers.

Dealing with a dementia patient in the hospital is challenging. It is tiring and it can be quite frustrating.  Remember that the hospital staff, doctors and nurses included, work for you.  You don’t have to be bossy, impatient, or unkind when dealing with them, but you are trusting them with someone very precious to you.  Be sure she receives the very best care possible.

What tips would you add? Feel free to share in our comments section.

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With generous support from The Rosalinde and Arthur Gilbert Foundation, three awards of $20,000 each will be given to organizations to recognize unique programs that address the needs of Alzheimer’s caregivers. One award will be granted in each of these categories:

- Diverse/Multicultural Communities
- Creative Expression
- Policy and Advocacy

Family Caregiver Alliance is overseeing this national awards program. To see the details about the awards and access the online application go here.

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