“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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• Homewatch CareGivers Announces 2010 Family Caregiver of the Year Award (caregiving.com)
• Ask Denise: How Do I Find a Good Caregiver for My Mom? (caregiving.com)

“They called me at 10 p.m. Monday night,” the family caregiver said, “to tell me he was agitated and I needed to hire a caregiver to sit with him. Who in the world could I find at 10 at night?”

“I know,” another family caregiver said. “I just stay with my husband when he’s hospitalized.”

A hospitalized caree is akin to a traumatized caree. Hospitalizations cause confusion, anxiety, discomfort. Many times, the worst place for a caree is a hospital. Most times, it’s the only place that has what your caree needs to be better.

Horror stories of hospitalizations aren’t new—family caregivers have been telling me about the difficulties they experience in hospitals for the past 20 years. Chances are you have more than your share to share. I’m perplexed, though, why hospitals can’t make adjustments to better care for older patients.

Hospital administrators have aging relatives, too. Surely, they’ve experienced what you’ve experienced. If they haven’t, I would think the fear of experiencing what you experience would be the catalyst for change.

So, why, I wonder, can’t hospitals do better?

Related Articles

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• Persons with Advanced Dementia More Likely to Receive Feeding Tubes at Larger, For-Profit Hospitals
  (caregiving.com)
• A Dementia Patient Hospitalized: What to Expect (caregiving.com)

First, I want to thank you for offering your help and for all the help you’ve been giving.  Bless You!

Here’s my situation:  My mom has dementia of the frontal lobe.  Her first diagnose was verbal aphasia.  It’s years later, my Mom is in a care facility on the dementia floor.  She hasn’t spoken in years.  At this point, it’s hard to tell if she understands anything.  According to a psychologist I know who has worked with dementia patients for 30 years, my Mom’s brain has deteriorated because of her disease to the point where it doesn’t make connections, i.e. not receiving or processing the information she gets from her senses.  She is mostly in a prone position with her head raised.  She can open her eyes and look at you but doesn’t seem to react.  Her hands and arms are stiff and are atrophying (?).  She herself is very stiff.  The psychologist believes that all that is left are basic automatic body responses – opening eyes, staring, etc. She has no serious illnesses so she could be with us for a long time to come.

As I understand what I have learned about her disease stage, this is the case.  My sister disagrees and insists she sees signs of understanding.  But that is another story.

My question for you is this:  Where can I go to find out what I can do for her when I visit?  I talk to her [no response, of course], feed her at mealtimes. cool her off if she’s hot and am thinking of reading to her.  My torment is that I don’t know what to do for her and am hesitant to do anything for fear that on some level it would hurt instead of help.  Without any kind of recognizable feedback from her, I’m torn and frustrated.  I’d like to help ease her situation in any little way I can.

I visit her regularly mostly to make sure that she’s being taken care of, to indicate to the staff that her family is keeping an eye on her, to ease the strain my sister feels, and to check her condition and make sure nothing is being overlooked.

I’d like to massage her arms/hands but I need to learn if it’s OK and how to do it properly.  I’d like to do anything else that is known to be helpful.  I’ve been searching on the internet for quite awhile and I’ve learned a lot but I haven’t been able to find the kind of specific information I’m looking for.

What kind of things do people who know about this level of existence do with their patients?  I believe there must be something that can and should be done for her as we share this life experience with her.  As you know, this has been and is a long, painful, confusing and frustrating journey.  My brother, sister and I have never known anyone else who went through this.  We’ve done the best that we can I think but we were ill equipped to deal with it.  We’re continuing to search for ways to help our Mom.

Any help you could give me in this quest would be tremendously helpful.

Hello,

First, because you love your mom so much, you are doing just exactly what she needs. Loving her and visiting her are the best medicines for her.

Massaging her arms and hands is a great idea. In this stage of her disease process, range-of-motion exercises can be really helpful, particularly with the “stiffness.” Because she’s in a care facility, ask the staff to show you range-of-motions exercises you can do for your mom. The exercises will consist of moving her arms and legs to the fullest motion possible.

I’ve posted a three-part video series on range-of-motion exercises below. (Again, before beginning any exercises, check with the staff.)

I also would suggest asking the staff about Hospice services for your mom. Although she could live many years longer, it’s good to understand when your mom would be appropriate to receive the services. The Hospice staff will make sure your mom is comfortable and pain-free, as well as provide emotional support for you and your siblings.

I think your idea of reading to your mom is terrific! Bring a great book for you both to enjoy. You also can bring your mom’s favorite music for you both to listen to. And, tell her about your day–the good, bad, the frustrating. Share memories with her of when you were a kid, dishes she cooked that were your favorite, vacations you took that you loved. Perhaps the understanding is gone, but I believe she feels your presence and, most importantly, your love.

I hope this helps!

Part 1:

Part 2:

Part 3:

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.

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Gay Hanna, Executive Director of NCCA said, “Cases of dementia and Alzheimer’s disease increase with age, so as the population lives longer more people will be diagnosed. This symposium is unique in that it focuses on innovative ways to bring together cultural institutions and healthcare facilities to create low cost and high quality services for people with dementia and their caregivers.”

“This symposium showcases best-practice programs that engage people with dementia and their caregivers in activities using the arts,” said Dennis White, president and CEO, MetLife Foundation. “MetLife Foundation is pleased to support this initiative to broaden creative partnerships throughout communities in the United States.”

The first workshop, held at IONA Senior Services will feature certification on “The TimeSlips Creative Storytelling Project” which uses images and oral communication to encourage people with dementia to tell stories. Anne Basting, Director of the Center on Age & Community at the University of Wisconsin and Founder and Director of TimeSlips will lead the workshop. The day will close with The 22nd Annual Nancy Hanks Lecture on Arts and Public Policy featuring Mr. Marsalis.

The Tuesday, March 31 workshop, held at The Phillips Collection, explores how to creatively engage people with dementia, featuring supporting research presented by Gene Cohen, MD, Ph.D. Director of the Center on Aging, Health and Humanities at The George Washington University. Francesca Rosenberg, Director of Community Outreach, Museum of Modern Art, will present on The Museum of Modern Art’s (MoMA) Alzheimer’s Project: Arts for the Aging, an interactive program that brings art to people with Alzheimer’s and their caregivers. Other national programs featured include StoryCorps Memory Loss Initiative which encourages people with memory loss to share and record their stories, Arts for the Aging, and TimeSlips.

The conference closes on Wednesday, April 1, with a one-of-a-kind on-site training session on, “Meet Me at MoMA,” at The Kreeger Museum led by Rosenberg. The training will focus on preparation, artwork selection, in-gallery facilitation and interaction, audience dynamic and evaluation. During the session, participants will learn to develop their own programs.

The symposium is the second in a three-part series addressing creative aging through lifelong learning, health and wellness, and civic engagement. The first conference was in Miami, with the final conference to be held in San Francisco. The symposia series is targeted toward professionals in the fields of aging, education, healthcare, faith-based services, museum education, caregiving, social services, and the arts.

Scholarships and continuing education credits are available. For more information on registration, programming or membership, please contact the NCCA office at info@creativeaging.org or (202) 895-9456.
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TimeSlips is a creative storytelling method designed by Anne Basting (PhD) in 1998 to be used with people with dementia and their caregivers. For more information visit http://www.timeslips.org/

StoryCorps is a nonprofit project started in 2003 whose mission is to honor and celebrate one another’s lives through listening. The program has recorded over 35,000 oral histories from everyday people. Each conversation is recorded on a free CD and archived for the Library of Congress. Their Memory Loss Initiative supports and encourages people with memory loss to share their stories.  http://www.storycorps.net/initiatives/mli

The MoMA Alzheimer’s Project: Making Art Accessible to People with Dementia, provides individuals with Alzheimer’s and their family members or caregivers a chance to work with specially trained museum educators, artists, or exhibitions as a way to promote dialogue. For more information visit http://www.alznyc.org/events/moma.asp

Arts For The Aging is a nonprofit organization that provides visual, performing, literary arts outreach programs specially designed to enhance the health and well-being of seniors.  http://www.aftaarts.org/

Oh boy do I have questions!  But I will try to keep it simple.

I am the main cargiver for my elderly Mother. She just turned 94 last March. Hey, I’m proud of the fact that she is sill able to get around albeit more slowly. She has been showing early signs of dimentia, with some good days and some bad days. My daughter, who is almost 30, recently moved in with us to help me. Talk about tug ‘o war!

My main question is how do I get mother to “let go”? What I mean by “letting go” is Mother still wanting to do everything and have control over everything. She has her good days and her bad days and has had days where she wants us (my daughter and I) to leave her house. Other days she says we are all in this together! I have Power of Attorney but Mother won’t let me do anything without a struggle. I’m stressed enough as it is, but it is a constant battle just doing every day things!

We have taken her to the doctor, but that always seems to be when she is having a “good day”.  Mother loves her doctor, my daughter and I do not. He is very personable to his patients, but does not know how to handle family. Mother will not let us take her to another doctor. My daughter has been working in the medical field since she graduated from college, so I have differed a lot of the medical issues to her.  Sensing a bit of depression showing up in Mother, my daughter called the doctor asking for a recomendation. He has recommended a psychiatrist. Mother does not think there is anything wrong, so if I make this appointment how do I explain it to her?

I know a lot of this sounds very confusing, but, well…..help!!

Hello,

It sounds like you are really doing a great job with your mom. Here’s why: The toughest part is balancing your mom’s independence with her safety. It sounds like you’re giving her room to make her decisions (i.e., such as keeping the doctor she likes) while staying involved so you are able to see problems as soon as possible (i.e., she may be depressed). It’s also great that your daughter is helping–it’s great to have extra hands to help and a good friend to whom you can vent.

I can understand your frustration that your mom seems on board to having help one day, then completely dismisses you the next. This actually is quite normal–it’s your mom’s adjustment period to needing help. She’s already experienced lots of losses and changes (loss of friends, spouse, physical changes) so holding on to staying at home will be particularly important. We all adjust to change in different ways and timeframes. What may be an easy adjustment for you or I may be quite difficult for your mom. And, it sounds like it’s really important to your mom that she maintain her independence as long as possible–and, to her, you may be a huge barrier to this. While certainly helping her is giving to her, she may really feel you are taking from her–taking away her ability to do for herself.

Enjoy her good days and forgive her bad ones. Repeat to her that you all are in this together, you are on the same team. On her good days, when she talks about being in this together, ask her questions. Questions like: What role does each team member play? How does the team communicate with each other? How do you provide feedback to each other? How often should you have a team meeting? Who else should be on the team? What’s her goal for the team? You also can mention to her that you totally understand that, on some days, she’ll want time to herself. On those days, you can tell her that you worry about her. Ask for suggestions on how you can give her privacy while making sure she’s okay (this can be your Plan B, your safety net). Her answers to your questions will give you insights that will be helpful as you all move forward. (These questions are also great for you and your daughter to address–you are a sub-team of the team. You also can ask each other: How do we support ourselves? Who supports us? And, how often do each of us get a break?)

On her bad days, when she tells you to leave, just put your Plan B into place. Your Plan B could be that you call her later to make sure she’s okay, you ask another relative to call her, you make sure she has easy-to-prepare food, easy access to medications or other supplies, and can reach you in case of an emergency. Before you leave, you can give her a hug and a kiss (even when you feel really frustrated with her), tell you love her.

You may look into an Emergency Response System so that if an emergency happens, she’ll be able to get help. You can call your Area Agency on Aging to find out about these services. You also can check with your local Alzheimer’s Association to learn about support groups, community services and information that can help all of you.

Of course, as her dementia increases, you’ll have to step in and take over if she make decisions that will endanger her.

It’s great that her doctor recommended a psychiatrist. Because your mom really likes her doctor, you can tell her: Her doctor has referred her to a specialist just to make sure all is well. (Although you have difficulties with her doctor, it’s great that he has referred to her a psychiatrist. Unfortunately, some physicians would dismiss your worries about her depression.) You can tell her that you know how important it is to her to follow doctor’s orders, so you’ve made an appointment.

Finally, all of this is trial and error. You’ll have good days, when you seem to know just what to say and do, and bad days, when you can’t seem to do anything right. Just as you do for your mom, celebrate your good days and forgive your bad. Mistakes are merely learning opportunities. You’re doing your best–and that’s absolutely the best you can do.

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