In past blogs, I’ve talked about how the holidays are bittersweet for many caregivers, with the increased stress levels and happy memories of the past contrasting with the difficulties of the present.  These extra demands on time and energy can seem overwhelming both to you and your aging parent.

Try to create a balance between rest and activity. In order to keep up with family traditions, take time to assess how important these traditions are and how they affect your responsibilities of caring for your aging parent - especially when your parent has Alzheimer’s or other chronic illnesses such as diabetes, CHF, or arthritis. 

Start early and write down activities that are important to you. As you are making your calendar remember to:

• Keep or adapt family traditions that are important to you
• Include your aging parent as much as possible
• Recognize that things will be different
• Encourage friends and family to visit you this year to limit the number of trips you have to arrange for your aging parent
• If your parent has Alzheimer’s, avoid crowds, changes in routine, and strange surroundings that may cause confusion or agitation 
• Do your best to enjoy yourself
• Try to find time for the holiday things you like to do, even if it means asking a friend or family member to spend time with your aging parent while you are out
• If there are occasions that are large events, try to have a space available where your parent can rest, be alone for awhile, or spend some time with a smaller number of people, if needed.

Most importantly:

• Have realistic expectations about what you can do
• Take care of your needs and keep it as simple as possible!

For more information on caregiving, you may want to visit the National Institute on Aging and explore their available publications.

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.

"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.

It's that time of year to participate in the fight against Alzheimer's Disease.  The Alzheimer's Association Memory Walk is the nation's largest event to raise funding for research and raise awareness for Alzheimer's care and support.  Over 600 communities across the nation organize these walks. 
Alzheimer's Disease is the 6th leading cause of death in the U.S.  There is no current cure for Alzheimer's but researchers are hopeful and continue to make great strides in treatment options and working towards finding a cure.
I encourage everyone to participate in your local Memory Walk.  For more information, check out the national Memory Walk website to register for a walk or to donate.

Just a quick note to announce the production release of SCANS V1.1.  The key enhancements include:

1. Search Capability for Issues, Solutions, and Resources
2. New Resources and Tools for the following:
   • Alcoholism
   • Suicide
   • Pressure Ulcers
   • Falls
   • Confusion and Alzheimer’s disease
   • Hoarding behavior and Alzheimer’s disease
   • Sun-downing and Alzheimer’s disease
   • Wandering
   • Prescription Drug Abuse
   • Transportation resources for both FL and IN
   • Resources by state
   • Alzheimer’s disease resources
   • Malnutrition info
   • Cultural
   • Spirituality
   • Long Term Care Insurance
   • Nutrition and Osteoporosis
   • Nutrition and Cancer
   • Nutrition and COPD
   • Dehydration
   • Oral Health for Older Adults
   • Nutrition and Vitamin B-12 deficiency
   • Beliefs and Practices
   
   

I've had several people ask me how SCANS (our Senior Care Navigation System) will develop over the life of the Indiana 21st Century Research and Technology Fund grant and beyond.

Version 1.0 of SCANS has just gone live, as active blog readers will know.  Training was completed yesterday and the system is already in the hands of Health Care Managers to improve geriatric care.

Over the next few months we are developing and deploying a series of "point" releases to and features and functionality of the system.  V1.1, for example, will improve the search capabilities of the application to provide easier access to solutions and tools for specific senior health care issues  (e.g. dementia information, well-being concerns, depression, and so on).  The plan includes the following releases:

SCANS    V1.0    Knowledge Repository 
               V1.1    Expanded Search
               V1.2    Enhanced Navigator Integration 
               V1.3    Localization and Enhanced Branding Support

Next, there are a series of major releases planned.  These provide dramatic advances in application capability and can even result in fundamental changes in the geriatric care profession.  The release plan is as follows:

SCANS  V2.0  Reasoning Engine 
SCANS  V3.0  Automated Knowledge Collection  
SCANS  V4.0  Outcomes Validation

Great news for families caring for aging parents!

There are multiple products and tools on the market today to assist in dementia care and to help provide a sense of independence for the person with dementia.  Those products range from memory games to household items, like door knobs and safety devices.  But which products really work?  Mark Warner, a gerontologist, and his wife did a webcast on August 13th discussing the pros and cons of these products and how to find them.  To listen to the webcast, click on the link HealthTalk.

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.

The My Health Care Manager's Client Portal serves as a communication platform for families caring for aging parents. It provides easy access to information like:

• Schedule of care events (e.g. medical appointments, therapy, geriatric care visits)
• Medical issues (e.g. Alzheimer's, arthritis, incontinence, congestive heart failure, diabetes, COPD)
• Health provider contact information and specialties
• Medication list including dosage, frequency, prescribing physician, and other specifics
• Recent Hospitalizations
• Client contact information
• Updates on key issues of aging such as Caregiving, Advanced Directives, Living Independently, Family Communications, Depression, and more
• Resources
• and more

It also supports secure, private interactivity with the Health Care Manager providing geriatric care for the family using tools like a discussion board, contact logs documenting visits and phone conversations, and posting of care goals like improving home safety, reducing isolation, improving depression, improving mobility, supporting treatment plans, and so on.

Years ago when I went away to college, I gave my Mother a small plaque with the following saying:

“Children hold their Mother’s hands for awhile and their hearts forever.”

This plaque has been carefully hung in 4-5 residences, following my Mother as she moved and downsized during the last 30 years.  Today, it has “pride of place” in her bedroom and hangs near the door. 

Yesterday, I was visiting and helping my Mother get dressed and ready for the day.  She noticed the plaque and said it should be revised to read “Mothers hold their children’s hands” and insisted that she would not know what to do if I wasn’t there to help her. Sadly, she recognizes that she is “slipping” and wonders aloud what is wrong with her.  She asks me why she can’t remember the day or date and why she can’t decide what to wear and why she can’t find her purse.  I reassure her that she is doing fine.  I tell her it is common to forget a few things when you get older and explain that the Doctor recently adjusted her medicines which could be causing some confusion and memory loss. 

Later, I can’t stop thinking about our conversation and realize that “role reversal” just doesn’t begin to describe the life of an adult caregiver.  Role reversal sounds so sensible and orderly….yet there is nothing sensible or orderly about caring for an aging parent.  This isn’t the natural order of things…or is it?  Many of my friends are caregivers for their parents too and we all agree that from our perspective…..role reversal is uncomfortable and difficult.   Some of our parents readily accept role reversal, yet others fight the switch at all costs fearing a loss of independence and control.  Role reversal doesn’t occur overnight, but creeps into our consciousness.  Until one day we realize that…. we are holding the hands of our parents and their hearts as well.

My friend recently asked me about recommendations for improving family communications about their aging parents through the use of technology.  Their family is struggling with keeping everyone current on their parent's situation and having a more even view of care required to keep them living independently. 

No surprise to most of you, this is a very common problem.  Typically the family member living nearby and providing help with aging parents every week has to convince the distant relatives that problem is emerging.  Occasionally, it even works the other way.  A visiting family member who hasn't seen mom or dad in a while can sometimes be struck by the a dramatic decline in cognitive ability, memory loss, or even overall health that has crept up on the local caregiver.

There are several good free tools for sharing information with your family.  Many people use Yahoo Groups  for this (to learn more click here).  It's free and easy to use, but to take full advantage of the portal family members must have a My Yahoo ID.  The Id is free, as well, but it's extra steps.  These groups can have restricted membership and other monitoring controls.  Without a Yahoo ID people can still participate in email communication through the group much like a classic list-serve.

Google has a similar tool (click here).  There are also a large variety of these with a more specific medical focus.

Jacqueline Marcell (author and former professor) recently posted on the web the top 10 eldercare recommendations.

1. Consider buying long-term care insurance.  Long-term care insurance can help cover home care services, visiting nurses, community programs like adult day services, and nursing home and assisted living expenses.
2. Consult an elder law attorney.  Elder law attorneys specialize in the needs of older adults and can provide guidance in estate planning, advance directives, and guardianship and conservatorship.
3. Utilize available resources, like the Alzheimer's Association or the Area Agency on Aging.
4. Review medications with your physicians.  Physicians should know all the prescriptions, OTC, supplements, and vitamins a senior is taking.  They can review the meds and determine if it is an appropriate and effective combination.
5. Consult a physician or other professional regarding mental health.  Some seniors experience depression, anxiety or behavioral issues with dementia.  A physician or professional can provide effective tips and interventions for caregivers.
6. If your loved one has dementia, learn how to effectively communicate with them (see some of my past blogs).
7. Validate feelings.  Validating and acknowledging how a senior feels about their health and overall situation instills a sense of comfort.
8. Utilize respite care services.  Adult day services and other community programs are a great way to provide social interaction for seniors while offering a break to caregivers.
9. Learn about your loved one's health conditions.  Educating oneself prepares caregivers for being effective advocates.
10. Take care of yourself!  (see some of my past blogs for information on how caregivers can take care of themselves).
    
    For more information, see healthcentral.com.

**The following post is authored by Natalie Langley, MSW, who came to us from the Alzheimer's Association.  She is working on SCANS (for more on SCANS, please see Eric's blog by clicking here) and will be a 'guest blogger' from time to time.**

Ever hear people call older adults “sweetie” or “honey”?  Working in health care settings before, I often heard staff using words such as these when talking to residents.  While most people have good intentions and they believe they are just being kind to residents when talking with them, research has now shown that talking to older adults with Alzheimer’s disease residing in nursing homes in a childlike manner are more likely to receive resistance from the residents. 

Colleagues at the University of Kansas School of Nursing have found there is a correlation between how nursing home staff communicate with residents who have dementia and residents’ subsequent resistance to care.  The researchers have coined the term “elderspeak” as talking to residents in an overly caring and controlling manner.  In addition, elderspeak is communicating to the residents similar to “baby talk” using such words as “Dearie” or “Sweetie”.  Research showed that the residents were more likely to cooperate with care when normal adult communication was used.   When nursing staff used elderspeak on the residents, behaviors such as grabbing objects, saying no, pulling away, screaming, hitting/kicking, and threatening were increased. 

Older adults are just that…adults- and should not be talked to as a child but rather in a respectful way just as you would carry on a conversation with any other adult.  They should still be treated with respect no matter their age or if they have Alzheimer’s disease.  Remember: They are a person first, before their disease.  If you have a loved one in the nursing home where you feel the staff is not being respectful of the resident and talking to him/her in a childlike manner, please speak with the staff at the nursing home about your concerns. 

This is going to be a greater challenge as more people are diagnosed with this horrible disease.  According to the new Facts and Figures released by the Alzheimer’s Association in 2008, it is estimated that there are currently 5.2 million Americans who have Alzheimer’s and by the year 2050 that number is expected to be 16 million.  It is important to educate health care professionals about how to speak with older adults now to help maintain a good quality of life as they move into their later years.  For more information on this study, please click here or go to http://www.alz.org/Icad/_icad_release_072808_8am_communication.asp.

We all plan – it is how we bring order to our lives and make sure the important things get done.  But when you are caring for a senior, even the most well crafted plans can’t solve all the problems.  Planning cannot stop a mental or physical decline.  Planning can’t stop a senior from having a bad day and upsetting the plans already in place.  Planning can’t ensure that what you think will happen …..will actually take place.  Planning can’t buffer your emotions when faced with a progressive disease such as Alzheimer’s.

So, why plan?  Why spend time and energy on something that won’t help?  Should we instead just take each day as it comes, with no thought to the future? 

My experience is that planning can help.  It can help a caregiver bring a little structure to a very challenging situation.  Planning can save time too.   And being proactive can ensure that potential solutions are explored ahead of time thereby reducing stress during a time of crisis.

Following are a few planning suggestions for caregivers:

• Create a list of all the important people in your parent’s life and include their phone numbers. For example:  all children and close relatives, neighbors, Doctors and health care providers, Assisted Living personnel, health insurance contact (and policy #’s), attorney, financial planner, minister, etc.  Carry this with you in your wallet.  Then when you need to call someone, you don’t lose time hunting for phone numbers. 
• Take the time you think it will do something and multiply by 2 or 3, depending on your parent’s physical and mental condition.  While it could take you a ½ hour to zip through the grocery store….it can take 3 times longer if accompanied by a senior who moves slowly or is confused about what to buy.
• Build good relationships with the people that care for your parent.  Take the time to meet the new Executive Director of the Assisted Living facility and introduce yourself to new staff members.  Be interested, engaged and respectful when dealing with your parent’s Doctor and their staff.
• Stay attuned to eldercare issues addressed in your local paper.  Is there a new Memory Care facility opening soon?  Have additional programs been added to the Senior Center?  Has the city added transportation options for seniors? 

As you may have heard, actress Estelle Getty passed away earlier this week at the age of 84 from advanced Lewy Body Dementia.  Estelle was most widely known for her role as "Sophia" on the TV show The Golden Girls.  I remember watching that show when I was younger and even to this day, I continue to watch re-runs on TV....they still crack me up!  Sophia was the quick-witted, humorous 80-something golden girl.  She and 3 other ladies all lived together in a house in Miami.  I feel the show really did justice to the older adult population.  They showed independent women who were active in the community, had jobs, had a love life, and leaned on each other for support.  There are still stigmas today about older people like "they're bad drivers", "they're grouchy all the time", and "they don't have sex".  And, with a society trying so hard to not age, overcoming those stigmas becomes challenging.  However, I do feel that those stigmas are diminishing.  Even though The Golden Girls was filmed in the late 80s and 90s, what those ladies portrayed then is still real today.  The Baby Boomers today are active both physically and socially and are independent people who plan for the future.  As the years go on, the aging population will continue to grow and currently the number of people entering the workforce to work in geriatrics is not increasing.  I have always told my social work students to spend extra time with your grandparents and with their friends, or volunteer at an assisted living facility or nursing home.  Get to know these people- they have had very interesting lives and still enjoy life and activities that make them happy.  Some of my past patients and clients have made me a better person.  I will always work with this population, they are my passion.  As a nation, they are our future. 
Estelle was once asked in an interview what was the one thing that makes a person age well.  She simply stated humor...you have to have humor.

As a follow up to my blog about safety issues with seniors, I found another important handout on Alzheimer's Disease and wandering.  It provides good information, tips, and resources.  Please check out In Search of the Alzheimer's Wanderer by Mark Warner.  Mark is also in charge of the Alzheimer's Daily News, a publication of the Ageless Design Research Foundation.  He sends daily emails regarding news and information about Alzheimer's Disease.  To subscribe to this free publication, check out his website at www.alznews.org.

Summertime is always great to be outdoors, but with the high temperatures, the risks of heat exhaustion and heat stroke are high.  Heat exhaution is caused by exposure to high temperatures and inadequate replacement of fluids.  Those most at risk for heat exhaustion are seniors, people with high blood pressure, and people who work outdoors the majority of the day.  Warning signs include:  heavy sweating, paleness, muscle cramps, tiredness, weakness, dizziness, headache, nausea/vomiting, and fainting.  The person's skin may be cool and wet, pulse may be fast and weak, and breathing may become fast and shallow.  If the person is not treated, it may progress to a heat stroke.  To help prevent heat exhaustion, have readily available cool, non-alcoholic beverages, stop and rest every 1-2 hours when outside, wear lightweight clothing, take a break in an air-conditioned area, take a cool shower/bath after being outdoors for a long period of time.  For more information, check out WebMD.com.

An Alzheimer's patient once came to me after he had got out of his house and was found hours later in a ditch approximately 2 miles from his house.  Wandering is often a scary symptom of Alzheimer's disease and dementia.  It's confusing and scary for a senior who does not know where he/she is or where they are going; and is scary and worrisome for family caregivers.  Wandering can occur anytime but tends to increase in the late afternoon/early evening hours.  There are several things caregivers can do to keep their loved ones safe at home. 

Tip #1:  Use deadbolts on doors leading outside, place them high or low on doors
Tip #2:  Take locks off of bathroom and bedroom doors to avoid your loved one from locking themselves in
Tip #3:  As the sun starts to go down, close the blinds/curtains and turn lights on
Tip #4:  Install appliances that shut off automatically
Tip #5:  Keep toxins i.e. cleaners, bleach, poisons; and prescription medications in a safe, secure space
Tip #6:  Remove clutter from around the house
Tip #7:  Install a door alarm or place a motion sensor in your loved one's room at night to alert you when they are awake and moving
Tip #8:  Label doors, drawers, and cabinets; this is most helpful in the earlier stages

A professional geriatric care manager can help you in reviewing your home and finding assistance for home modifications.  For more tips and information, check out The Complete Guide to Alzheimer's-Proofing Your Home and home modification tips.