Just to give you a feel for size and scope of the eldercare problem, I thought I'd share a few dramatic numbers. 

• By 2030 the population of seniors in the United States will be 71.5 million, more than doubling in just 30 years - Department of Health and Human Services, Administration on Aging, 2006.
• 24 billion hours were spent in caregiving in 1997. - Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Affairs. 1999
• In 2006, productivity loses to U.S. business were estimated at $33.6 billion. Nearly 80% of these caregivers, were caring for someone over the age of 50 - The MetLife Caregiving Cost Study: Productivity Loses to U.S. Business. MetLife Mature Market Institute and National Alliance for Caregiving. 2006.

You can see from these statistics caring for aging parents is big and growing problem.  It also too big to expect health care providers to provide the solutions.  Caregivers themselves are going to be overwhelmed, as well.  On a personal scale many are already.

Technology can help and may be the only way to cope with the growing issues.

Usually I blog about information for caregivers which are often adults.  But what about the children and teenagers who are also in the family and trying to understand grandma or grandpa's health condition?  Dementia and Alzheimer's Disease are often hard for children and teenagers to understand how the disease affects their loved one.  They don't understand why grandma doesn't know them, or why grandpa thinks they are their child, or why grandma gets angry all the time.  The Alzheimer's Association can be a great resource for information and tips on how to talk to your children and teens about this disease.  There are many children's books available that explain dementia in a way that they can understand them.  Check your local book store for more information.  For teenagers, there is a respite camp called Building Bridges.  This camp provides respite as well as educational support.  2008 was the first year for this camp and it was a great success!  The Alzheimer's Association has endorsed this camp as well.  For more information about the camp, recommended books, and additional resources, check out Building Bridges.

After posting my blog yesterday about caregiver stress, I discovered that Dear Abby just gave advice to a stressed-out reader on the 10th (read the letter by clicking here).  The letter was from ‘Overwhelmed in Cincinnati’, who is struggling to balance her roles as a caregiver for her mother, who has Alzheimer’s, and a mother of three – while also juggling a career.  She feels she’s in over her head with worries about her mother’s safety, well-being, and financial considerations. 

Dear Abby wisely referred ‘Overwhelmed’ to the Caregiver Stress Check from the Alzheimer’s Association (www.alz.org) that I mentioned in my blog yesterday.  If you’re a caregiver, please remember the importance of taking care of yourself.  If you are experiencing a lot of stress, take the quiz here.  Your local Alzheimer’s Association, health care provider, or a geriatric care manager are all good resources to help you manage your responsibilities and reduce your stress.

During this Holiday season, learn how you can recognize the signs of caregiver stress.  If you are a caregiver, it's important to take care of yourself.  The Alzheimer's Association has information specifically for caregivers or those with Alzheimer's Disease and dementia.  Take the Alzheimer's Association Stress Quiz and learn how you feel.  Then review resources, many of which can be found through the Alzheimer’s Association.  There is a special web page filled with helpful tips to make the holidays less stressful for families coping with Alzheimer's. Caregiving is stressful anytime of the year. 

If you answer YES to more than two of the following questions you may want talk to your physician.
Y    N  I don’t get enough sleep.   
Y    N  I get too much sleep.
Y    N  I have recently experienced unplanned weight gain or loss.
Y    N  I feel tired or without energy most of the time.
Y    N  I don’t have much interest in activities I used to enjoy, such as
   reading, walking, or visiting with friends.
Y    N  I am easily irritated, angered, or saddened.
Y    N  I have frequent headaches, stomachaches, or other physical 
   problems.

Remember this holiday season to take care of yourself – Make YOUR health a priority by following these tips:

• Get adequate rest.
• Exercise most days of the week.
• Eat a low-fat diet rich in fruits and vegetables.
• Participate in social activities—they can help you feel connected and may
  actually reduce stress.
• Keep in touch with friends and family.
• Find out what community resources are available to you.
• Ask for and accept help.
• Establish a routine. Prioritize and make lists.
• Look to faith-based groups for support and help.
• Visit your health care provider or doctor for a checkup if you are having physical problems.

My Mother’s  sixteen month stay at an Assisted Living facility has been tremendously impacted by staff turnover.  Every time a “new” Assisted Living Director starts we schedule a care conference to ensure that the plans for my mother are well understood and will be implemented.  However, we have found that it is not that simple… for things don’t seem to go as planned.  A recent change in Assisted Living Directors has resulted in a scarce nursing staff, laundry that does not get done, lunch that doesn’t get delivered and dishes that remain in the sink. 

The bottom line is that my Mother suffers each time staff turns over.  Caregivers suffer too, as they are concerned about lapses in care and frustrated by dealing with the same issues over and over.  It doesn’t  seem that it should be that difficult to get the laundry done….esp. when the facility is charging $5K a month. 

Turnover is a problem for everyone.   Number one – it impacts care.  Number two – it is time consuming to constantly readdress the same issues.  Number three – it can’t help but influence staff morale which can affect actions and attitudes during daily resident interactions.

Based on our experience, I would definitely ask questions about management and staff turnover when touring  Assisted Living Facilities or other senior residences.  If the number seems high, think seriously about how this will affect your parent’s care and well-being.  The most beautiful building in the world won’t make up for a breakdown in staff communication, training and service delivery.

"Caring for an older adult can be rewarding and fulfilling but can also place great physical, emotional and financial demands on those who take care of them. In fact, a recent issue of the Journal of Immunology compared Alzheimer’s caregivers to non-caregivers, finding that caregivers aged between four and eight years faster than non-caregivers. In light of these statistics, and in recognition of November as both National Alzheimer's Disease Awareness Month and National Family Caregivers Month, the American Occupational Therapy Association (AOTA) is offering tips for caring for the adult caregiver.

Research recently published in the American Journal of Geriatric Psychiatry tested an occupational therapy home intervention, the Tailored Activity Program (TAP), that systematically evaluates and tailors activities to individual capabilities and trains families in setting up and using activities in daily care. TAP reduced behaviors that trigger nursing home placement and the amount of time families spent supervising and providing care.

“Our research shows that occupational therapists play a critical role in the care of individuals with dementia and their family caregivers,” said Laura N. Gitlin, Ph.D., director of the Jefferson Center for Applied Research on Aging and Health and professor in the Department of Occupational Therapy at Thomas Jefferson University. “Occupational therapy practitioners are uniquely qualified to evaluate individual capabilities, engage individuals with dementia in activities, help families learn specific communication, task and environmental simplification strategies and to take care of themselves.”

Laurel Cargill Radley, MS, OTR, associate director of professional affairs at AOTA, adds, “Occupational therapists can help individuals and their families promote or maximize independence, safety and function.”

Occupational therapy practitioners recommend adult caregivers:

1. Join a therapy or discussion group for caregivers of older adults.
2. Share the responsibility of caring for an older adult.
3. Ask others for help.
4. Develop a schedule that distributes caregiving responsibility.
5. Consider adult daycare or home health aides to provide occasional breaks to full-time caregivers.
6. Create moments of joy throughout the day by participating in pleasurable activities.

Additional caregiver resources can be found on the Centers for Medicare&Medicaid Services’ (CMS) new Web site, http://www.medicare.gov/caregivers/.

Founded in 1917, the American Occupational Therapy Association (AOTA) represents the interests and concerns of more than 36,000 occupational therapists, assistants and students nationwide. The Association educates the public and advances the profession of occupational therapy by providing resources, setting standards including accreditations and serving as an advocate to improve health care. Based in Bethesda, Md., AOTA’s major programs and activities are directed toward promoting the professional development of its members and assuring consumer access to quality services so patients can maximize their individual potential. For more information, go to http://www.aota.org/."
This article was originally published by the American Occupational Therapy Association.

November is National Family Caregivers Month!!  National Family Caregivers Month is organized by the National Family Caregivers Association (NFCA), an organization that educates, supports, empowers, and speaks up for the more than 50 million Americans who care for a loved one.  National Family Caregivers Month is a time to celebrate all caregivers!
NFCA is hosting a free family caregivers teleclass to teach family caregivers how to improve their communication with healthcare professionals and become better healthcare advocates for themselves and their loved ones.  The 2-hour teleclass is being held November 6 and 13 at 2:00pm EST.  More information on the free teleclass is available here. 
Check your local Alzheimer's Association chapter, Area Agency on Aging, and local senior community for caregiver events in your area.

The Indiana Geriatrics Society hosted its annual conference in Nashville, Indiana a couple weeks ago.  It was a great day where colleagues met to network and learn about initiatives that will enhance the provision of eldercare services. The focus of the conference was on providing quality of care for older adults transitioning from one setting to another.  Latest evidence-based practices were shared formally and informally throughout the day.  Topics included a great review of psychotropic medications, a quality initiative for early screening of depression in primary care, and how to address wound care issues and fall prevention concerns.   The day ended with the vision for the future and the key role that informatics will play in assisting care providers.  Eric Tinsley summarized the day’s event explaining “caregiving” through life stages and how technology will assist older adults and their caregivers in coping with the transitions of care. Visit Eric’s blog for more information on tools for eldercare.

As a state affiliate of the American Geriatrics Society, IGS was created to enhance the visibility of geriatric medicine in Indiana, to provide local educational programs in geriatrics, and to provide input to the national organization on policy issues. This all-day conference demonstrated the intent of the organization. For more information on Indiana Geriatric Society, contact Kathy Frank RN, DNS, Geriatrics Program Administrator and the IGS COSAR representative for AGS at katfrank@iupui.edu.

In addition to caregivers having to shoulder the work load of the growing senior population, they are also naturally more engaged in caring for aging parents than health providers for most time their parents face the challenges of aging.  

If you create a "smoothed" picture of the health challenges faced by older adults, you get a continuum like the one shown below.

Each of the "humps" corresponds to major health incidents or living circumstance changes.  In the early part of the continuum, the senior is aging at home and later may require assistive care at a retirement, assisted living, or long term care community.

The health care providers only intersect with the caregiving need at the green arrows for acute or assistive care.  The vast majority of the continuum is addressed by family caregivers who are typically not trained health professionals.  These caregivers need support tools and services to provide the best quality of life for their parents and themselves.

Last week's Indiana Geriatric Society's Fall Conference was a terrific meeting.  Special thanks go to the speakers, the current Presidents Drs. Diane and Pat Healey, and conference organizer Kathy Frank and her team of volunteers for carrying off a great program. 

I wanted to share a few thoughts from the conference.  We are facing a serious problem in our Heath System.  The growing population of seniors, their expected longevity, and the small number of health care professionals entering geriatrics or even primary care make for an alarming future.  Health care providers simply won't be able to keep up.

This means that families will need help with aging parents.  That help will come from caregivers.  Most will be family members and some will be professionals such as Geriatric Care Managers, companions, and other eldercare service providers.

These caregivers (especially the family members) need more tools, more resources, and more expertise.  Most will not be trained health professionals and many will be caring for an senior for the first time.

I have the privilege of speaking tomorrow (October 10, 2008) at the Indiana Geriatrics Society Fall Conference. My topic is:

Vision for the Future: Impact of Informatics on the Continuum of Caregiving

At the core of the material I'll be covering I want to share ideas about how technology can improve the lives of seniors and the caregivers around them. 

This in not only a desirable thing; it is a necessary thing.  By 2030 the population of seniors in the United States will be 71.5 million, more than doubling in just 30 years according the Department of Health and Human Services, Administration on Aging, (2006). 

The truth is that there are not enough senior health care professionals, continuous care retirement communities, or even professional geriatric care managers to provide complete and meaningful support for all these seniors.  Caregivers dealing with aging parents or other loved ones must have tools that do not rely exclusively on the individual people from provider community.

After the conference tomorrow, I'll share more on these ideas. 

For a complete program on the IGS Fall Conference follow this link http://iucar.iu.edu/igsfall2008.pdf

For the past year, I have been doing my Mother’s laundry.  In the beginning I did everything – sheets, towels and personal laundry.  Soon that became too much – and I made arrangements for the Assisted Living facility to wash the sheets and towels.  But, I still did my Mother’s personal laundry because she did not want other people “touching” her things.

This plan worked at first, but proved to be very time consuming.  It seemed that I was always behind on laundry. I tried putting loads in before work and drying them when I got home at night.  I tried doing multiple loads on a Saturday AM.  I tried picking it up from my Mother more frequently and doing smaller loads at a time.  I tried multi-tasking by doing laundry and paying bills in the same evening.  But the laundry was ever present and the pile seemed to grow each day, despite my best efforts to take control of a seemingly easy task.  My frustration piled up too. 

I finally accepted the fact that “doing the laundry” was a task that could easily be done by someone else.  All I had to do was convince my Mother that someone else could do it too.  First, I talked with the administrator at the Assisted Living facility.  I learned that they could do the laundry and that they did each resident’s laundry separately.   They also used the detergent provided by the family, so that the laundry did not come out with an industrial smell and feel.  Finally, I had a frank discussion with my Mother and told her that I was having a difficult time finding the time to do her laundry and tote it back and forth.  I suggested that we “try” having her clothes washed on site.

Thankfully, she agreed and so far so good.  I have been “laundry-free” for two weeks.  I cannot begin to describe how getting rid of this chore has improved my caregiving outlook.  My Mother has adjusted very well to the new arrangement.

My advice to all caregivers is to evaluate the many tasks on your plate and try to find ones that can be done by others.  Whether it is laundry, grocery shopping or driving a parent to a weekly physical therapy appointment – enlist or hire someone else to assist with these tasks.  You will be so glad you did.  You will be better able to face the next caregiving challenge because your reserve of time and patience has not been depleted by routine tasks.

According to a recent study, more than 1/2 of those providing care to an aging adult experience some form of stress and strain.  This amount of stress can negatively affect your physical health, your emotional health and well-being, and your ability to provide care.  Taking care of yourself, taking breaks when needed, and utilizing the help of others is very important!  Some caregivers have been taking care of "mom" for years and oftentimes other family members forget how hard the caregiver is working, because it just becomes second-nature that you take care of mom.  I would like to take the time to say THANK YOU and shower all caregivers with applause and praise for their tremendous hardwork for being a caregiver of another person while still maintaining their own lives, jobs, children, etc. 

I love greeting cards, and I tend to spend quite a bit of time finding that right card for that right person.  A friend recently found a Caregiver Support greeting card, made by Carlton Cards...but only 1 card in a store full of every other kind of greeting cards, doesn't seem quite right.  However, the card reads, "The dedication and strength it takes to care the way you do is truly amazing.  It's hard giving so much of yourself, and yet you do so generously and lovingly.  You have a beautiful, caring heart - and you're doing a truly incredible job.  Hope you know what a difference you're making.  Hope you know how wonderful you are."
THANK YOU FOR BEING A CAREGIVER!

One of our greatest challenges as caregivers for our aging parents is getting an accurate and complete understanding of their health status.  Unfortunately, it is difficult to find a single source of unbiased guidance to help understand and coordinate our parents’ complicated issues of aging.  A big reason for this is the way the U.S. health care system works.  No health care provider is reimbursed for spending the time necessary to holistically understand all of the issues involved in a patient’s well-being.  With seniors covered by Medicare, the payments for allowable claims are for specific services delivered for single or closely-related issues.  This reality requires older adults to deal with multiple health issues, care providers, prescription medicines, and care plans by themselves or with the help of a trusted caregiver or a competent geriatric care manager.  For the few that can afford the charges, some physicians operate “concierge” practices that charge annual flat fees for unlimited access for primary care services and coordination with specialists.  However, these concierge practices are only able to serve a very small number of seniors, and the concept itself is subject to significant differences of opinion among physicians and health policy specialists.

We are finding that understanding and coordinating these complexities in our eldercare services is one of the greatest values we add for seniors and their families.  If you find yourself in a role similar to what we do, it is wise not to underestimate the difficulty and time it takes to gain a holistic view of an older adult’s health status.   Accompanying seniors to their health care providers’ appointments and participating in the debriefings at the end of the office visits is an excellent way to gain direct knowledge.  Taking good notes or (with the provider’s permission) recording the debriefing allows for accurate recollection when memories often fail to remember the details.  Discussing the various physician’s care plans with your parents’ primary care physician at an office visit can further help with a caregiver’s difficult job of gaining the holistic view necessary to be effective in your critically important role.

If your loved one lives in an assisted living facility or a nursing home, it is important for caregivers to know their rights as family members - and the rights of their loved one living there.  The federal government has many rules and regulations that these facilities must follow.  Each state then has additional rules and regulations that these facilities must follow.  This information is made public through the state department of health.  These facilities are also required to provide the residents/families a copy of the Resident Rights document, which is a list of your rights and can also be accessed through the state department of health. 

The social worker at the assisted living facility or nursing home is the liaison between the facility and the residents/families.  They are also to be an advocate for resident rights.  It is important for family members to educate themselves on the rules and regulations of these facilities.  If you feel the facility personnel is not working with you properly, outside assistance can be helpful.  Each community has an ombudsman, who is an advocate for people living in the residential facility.  They are employed by the state and usually work out of the Area Agency on Aging office.  To find your local ombudsman, contact your local Area Agency on Aging. 

A professional health care manager is also a good resource to utilize as an advocate and 3rd party when working with a residential facility.  Education and advocacy is a powerful asset for family members and seniors.

Asking for help is difficult.  Accepting help can be difficult too.  For some of us, asking for help feels like failure – i.e. if we can’t do it - we must not be smart enough, capable enough or care enough.  However, nothing is further from the truth.  Asking for help is sometimes the absolutely best thing caregivers can do….not just for themselves, but for their parents. 

It is impossible for any one person to be an expert on everything.  It is impossible for any one person to manage a huge number of caregiving tasks, in addition to managing work and family responsibilities.  Sometimes going it alone is not feasible or practical. 

Finding help is not difficult.  Tap into all the resources you can think of – use your informal network of friends, neighbors, and co-workers.  Consider developing a formal network with case workers, companion services, home health agencies and geriatric care managers.  This week, I estimate that the Geriatric Case Manager I work with here at My Health Care Manager saved me about 8 hours – by making phone calls to share concerns about my Mother’s declining health with the doctor and the assisted living facility. Then she followed up to make sure the doctor’s recommendations were followed and the tests he recommended took place.  This represented hours of work that would have been very difficult for me to accomplish in the midst of a very busy work day. 

The bottom line is that my Mother’s care is better when I utilize help.  Problems are more quickly identified and addressed.  Our Health Care Manager always keeps my sister and me informed, so we don’t feel disconnected from the issues surrounding my Mother’s health or care.  Additionally, our Health Care Manager offers suggestions and insight based on years of geriatric experience that help us provide the best care possible for our Mother. 

Don’t be a hero by trying to go it alone.  Caregivers don’t look good in capes.

Ask for help!

My colleague Jennifer brought another in home communication device/service to my attention recently.  It's called Celery. 

You may remember a previous blog (click here) on the Presto Printer; a great way to communicate with parents living independently at home of in a retirement community. 
Celery is a service which combines FAX and Email capability.  It allows a caregiver or remote family member to send an email to a FAX machine in their loved one's home.  This can include a text message and even pictures.  The FAX is hooked up to a standard phone line so you don't have to obtain Internet service or have a computer.  The exciting part is that the receiver can hand write a reply and FAX it back to a special Email service that will match it to a preset list of authorized email accounts and send the message on as an image.  This makes the communication two-way.  For more on Celery see their web site http://www.mycelery.com/. 

This could be used to reduce social isolation, provide reminders about heath care, improve medication management, and just keep in touch with distant and busy family members.

In several of my past blogs, I discussed safety concerns and the older adult.  One the main concern is medication safety. Not just the management of medications but how many are actually taken.

It is often reported in the news about a medical error made and the impact it has on individual lives.  Those articles are frequently about hospitals errors.  But have you ever thought about the older adult and how they manage at home...?  The impact our current health system has on managing medications...?  How chronic illnesses such as congestive heart failure, diabetes, and arthritis impact the older adult and his/her caregivers...?  Different providers – prescribing different medication – generic versus brand names.  multiple medications with multiple doses all affect the medication management and the safety of the older adult.

Let’s look at the key safety issue: polypharmacy (multiple medications).  
A caregiver may ask what defines polypharmacy or how many pills or too many?  The answer would have to be that different entities in the current health care system define Polypharmacy differently.  I have seen it defined as low as two or more medications, but in general it deals with using more than three to five medications or herbal supplements for longer than 90 days in a given year.  In my career I have witnessed shoe boxes filled with medications that have numbered over 20 different medications- especially when dealing with multiple chronic diseases, over the counter medications, herbs, and vitamins.

Where should the caregiver and/or older adult start in trying to deal with their medications?
First, realize that the main problem with polypharmacy is that it increases the clients’ risk for drug interactions.  Drug interactions occur when one medication or herbal supplement reacts negatively with another medication when they are taken together. It is important to report any side effects to your physician.
 
The following are some steps you can take to prevent drug interactions:

• Provide a complete list of your medications and herbal supplements to your physician and/or pharmacist
• Discuss how each medication/herbal supplement works inside the body.
• Verify with your physician that you are receiving the recommended dose of each medication/herbal supplement.
• Verify with your physician that you are receiving the recommended form of each medication/herbal supplement you are taking (pill, liquid, tea, extract).
• Determine how many times a day your medications/herbal supplements should be taken.
• Discuss any side effects that might be experienced.
• Discuss the common prescription medication interactions.
• Discuss the common herbal supplement interactions.

If you can not complete a list of medications, take them all into your physician or pharmacist and have a list made for you. 

The National Institute on Aging is a great resource for learning more about medication managements, herbs, vitamins and safety concerns - learn more by clicking here.

More than 50 million people provide care to a chronically ill, disabled, or aged family member or friend.  While caring for our loved ones is an important job, we often forget to take care of ourselves.  Statistics show that caregivers have a high risk for stress (physical and mental tension), heart problems/heart attack, sleep problems, and depression.  Caregivers also have a higher mortality rate than non-caregivers.  So, what can we do?  Take a break for a few hours or a few days...relax, have fun, take time for yourself and other family members, etc.
There are several community resources available that provide respite care.  Respite care is temporary relief or a temporary break from caregiving.  The local Area Agency on Aging offers home companions and volunteers who can come to your home to sit with your loved one while you run errands, go to lunch, take a break, etc.  To find your local area agency on aging, click on the link provided.  Adult day programs are offered in most communities and provide group programs for seniors during the day.  The provide social activities, meals/snacks, recreational outings, and assistance with care.  Most adult day programs allow you to drop your loved one off for a couple of hours up to a whole day.  Most are open Monday-Friday and are very helpful to those caregivers who work during the day.  To find an adult day program, click on the link provided.  If you would like to take a couple days off for a vacation or just a much needed break from caregiving, some nursing homes and assisted living facilities offer respite care.  This is a great option where your loved one could stay in there temporarily while receiving 24/7 medical and social care.  Most nursing homes and assisted living facilities offer respite care for up to 30 days.  Some communities also offer respite care homes or units, which allow up to 10 people to stay on a short-term basis.  Check your local nursing home, assisted living facility, Area Agency on Aging, or Alzheimer's Association for respite care information and resources.

I'm going to cheat just a little bit and pre-announce to my blog readers that SCANS Version 1.0 is about to go into production release. 

This is the Knowledge Repository Edition of SCANS.  It provides Health Care Managers at My Health Care Manager and our Affiliates with a comprehensive knowledge base of best practices in geriatric care. 

It contains information on all of the most common problem areas encountered when caring for aging parents.  More importantly it provides concrete geriatric care solutions, step by step actions, and powerful, practical tools for implementation.    Some examples of the issues addressed by SCANS include:

• Behavioral Issues
• Caregiver Support
• Cognitive Issues
• Family Communications
• Continence Problems
• Emotional Concerns
• Environmental Issues
• Information Management
• Intellectual Engagement
• Medication Management
• Nutritional Needs
• Pain Management
• Prevention/Wellness
• Provider Coordination
• Service Coordination
• Social Support
• Spiritual Well-being
• and many more

Our Director or Research, Jean Bandos, puts it this way:

"My Health Care Manager is in the process of developing an advanced technology Knowledge Management and Decision Support System that will change the way geriatric care management is delivered. This system is directly concerned with the caregiving challenges of the senior and their family ...  (this) Knowledge  management and Decision Support System will assist the Health Care Managers in delivering complete, comprehensive, and predictable services."

Our Research and Development team is particularly proud of delivering this first version to commercial use in less the 4 months of receiving a major grant from the Indiana 21st Century Research and Technology Fund of the Indiana Economic Development Corporation.

More advances are in the works...