- Avoid having a rushed schedule. This only increases anxiety.
- If traveling by plane, minimize stops and long layovers in the airport
- Travel at a time when the person is most alert
- Rely on familiar and comfortable destinations
- Carry identification such as the Safe Return/Medic Alert bracelet, which can be purchased through the Alzheimer's Association.
Earlier this week I participated in an activity with my Mother and her fellow neighbors at a memory care unit. The game was called Penny Ante and began with everyone receiving 25 pennies and a pot holding pennies in reserve. Everyone took turns drawing cards from a deck and following the instructions. For example – “Take a penny from the pot if you have
ever seen the Golden Gate Bridge” or “Give every player a penny if they have blue eyes. “ There was a lot of laughter as pennies were lost and gained. To be honest there was some confusion too. One player drew a card – “Take a penny if you have ever visited New York City,” but could not remember if she had been to NYC or not. This is when my Mother shined. For her response was “I bet you have, you should take a penny.” When it was my Mother’s turn, she had to give a penny to everyone wearing blue. I happened to be the only one at the table wearing blue…which meant she had to give me a penny. She hesitated for a minute or two and I teasingly reminded her she needed to give me a penny…thinking she had forgotten that part of the game. She looked at me and said – “I know, I am looking for a shiny one for you.” A few seconds later, she pushed a shiny penny towards me, the best of the ones she had before her. My eyes filled as I realized she wanted to give her daughter the best she had….just as she had always done. In that moment, her love shined through the memory loss, the dementia, the falls and the frailty, to remind me that the Mother I know is “still here” shining bright as a new penny.
Many adults question their memory as they get older and wonder if losing their keys is a part of normal or healthy aging. Recently, the Alzheimer’s Association came out with a list of 10 signs to help distinguish between what is normal and what is not with your memory as you age.
So, what is normal and what isn’t?
Typical/Normal
1. Sometimes forgetting names or appointments but remembering them later
2. Making small errors sometimes when balancing a checkbook
3. Sometimes needing help with recording a TV show or help with microwave settings
4. Getting confused what day of the week it is but later figuring out what day it is
5. Visual changes due to cataracts or other eye problems
6. Sometimes having a difficult time coming up with a word while in conversations
7. Misplacing things once in a while such as the remote control or eyeglasses
8. Sometimes making a bad decision
9. Sometimes feeling of weary of family, work or other obligations
10. Developing a routine of how to do certain things and getting irritable when the routine is done a different way
What could be signs of Alzheimer’s?
1. Memory changes that disrupt life – Asking information repeatedly
2. Challenges in planning or solving problems – May have difficulty following a familiar recipe 3. Difficulty completing tasks at home or work – May have trouble finding the location of a place or remembering the rules of a favorite game
4. Confusion with time or place – Sometimes they forget where they are or how they got there
5. Trouble understanding visual images and spatial relationships – They may have trouble reading or judging distances
6. New problems with words with speaking or writing – May have trouble following or joining a conversation
7. Misplacing things and losing the ability to retrace steps – A person with Alzheimer’s may put things in unusual places and not remember where they put it
8. Decreased or poor judgment – They may use poor judgment when dealing with money such as giving large amounts of money to telemarketers
9. Withdrawal from work or social activities – They may have trouble remembering how to do their favorite hobby
10. Changes in mood and personality – They may become confused, suspicious, depressed, etc.
For more information on differences between normal and healthy aging vs. dementia, please visit the Alzheimer’s Association at www.alz.org or call their 24 hour helpline at 800-272-3900.
We know so much, yet so little about Alzheimer’s Disease. And what we do know can be very, very discouraging. Today we know that ….there is no cure, the disease worsens as it progresses, and while the drugs available may slow down the progression, they do not stop the disease. I find myself wondering – “Where is the hope?” “What does the future hold?” …… and most importantly “Where is the research?”

To learn more about the disease and what is being discussed for the future – visit HBO online and view the documentary “The Alzheimer’s Project” (http://www.hbo.com/alzheimers/). The series is divided into four segments. Each segment focuses on a different aspect of the disease including: The Memory Loss Tapes, Grandpa Do You Know Who I Am?, Momentum in Science, and Caregivers.
As an active caregiver for a Mother with Alzheimer’s, I found the series difficult to watch at times. Yet, I felt an instant bond with the other families I saw struggling with the same disease and, who like me; don’t seem to have all the answers. It was also comforting to learn about the research being done and the minor discoveries made to date. Hopefully the research will lead to a significant breakthrough to help better understand and eventually cure Alzheimer’s Disease.
At a recent appointment with a new doctor, I revealed my family’s history of Alzheimer’s Disease. To date, the cases I am aware of are Grandmother, Mother and Aunt. Of course I wonder if the next generation – me and my sister- will inherit this insidious disease. My doctor counseled that inflammation may seem to contribute to the disease. So, I left with advice to take a daily low dose aspirin and fish oil capsules. How much happier I would have been to receive a vaccine like the ones available for mumps, measles, shingles, etc. Maybe this will happen in the future – I certainly hope so.
Likely you have seen some variant or another of this article "Helping the Elderly Keep Their Driving Skills" talking about helping seniors keep their mind sharp. Whole companies have cropped up like the one mentioned in this article, Posit Science, around the idea computers and software can help.
Certainly games like these are interesting and often fun, but their claims are largely unproven. Comments like the brain is "the most important muscle in the body" is, at best, metaphorical. The brain is, of course, nerve tissue not muscle tissue. "Exercising" the brain has little impact on senior memory loss brought on by Alzheimer's or other serious forms of dementia.
Driving is one of the big safety issues with seniors and for those people who are not facing serious cognitive decline, they may find these games fun and somewhat beneficial. Of course, physical limitations such as immobility are not impacted. At a minimum, I would expect some gains in driving skill just from the heightened awareness. Likely most of us could gain from that lesson.
See more on Posit at http://www.positscience.com/.
The final installment of the SCANS 1.3 rolling release is complete. The July release includes some 22 new and revised tools and resources. The list includes:
- Medicare Summary
- Medicare A Information
- Medicare B
- Insurance Resource
- SHIP
- Medigap
- Medicare C and Advantage Plans
- Earwax
- Visual Impairment Websites
- Hearing Impairment Websites
- Visual Impairment Devices
- Optometrist vs. Ophthalmologist
- Bladder Training
- Foley Catheter Care
- Urinary Continence Education
- Incontinence Supplies
- Catheter Education and Support
- Brain vs. Bladder
- Incontinence – Foods to Avoid
- Tips to manage Incontinence with dementia
- Continence Bladder Diary
- Modify Environment to Assist with Continence
Last week I had the opportunity to present a paper at the Human-Computer Interaction International Conference. This was the 13th occurrence of the conference and the event was well attended by key researchers and companies concerned about how computers interact with people. Jean Bandos co-authored the paper titled "Impacting the Continuum of Caregiving through Innovation in Informatics: Senior Care Navigation System (SCANS)". Other members of the SCANS team contributed, as well. You won't find the paper in the conference proceedings however, due to Intellectual Property concerns with the conference publisher's copyright requirements. In spite of those restrictions the paper and the presentation were well received.
What struck me about the conference on a general level was the amount of attention being given internationally to the challenges of older adults and senior health care. Conference attendees came from China, Japan, UK, Germany, India, Spain, and many other places - representing some 49 countries in all. Support for seniors living independently and dealing with challenges like immobility, well-being, and cognitive decline surfaced as a major sub-theme to the conference. World wide researchers are examining how computers can help with aging parents.
The specifics were wide ranging from topics like augmented navigation for assistive mobility devices to ontologies for adaptive user interfaces to cope with the specific needs of the elderly.
I was genuinely encouraged that so many top brains are looking for ways to improve eldercare services.
The idea is that you carry this card in your wallet and in an emergency situation you can hand the card to a provider who can then view it on a computer capable of reading a data CD. Even if you are unconscious, medical personnel can find the card style CD and view it.
The CD contains things like:
- medication lists
- current diagnosis
- current allergies
- discharge summaries
- diagnostic test results
- and even educational materials
- First, not all emergencies will allow time for medical staff to leave the patient in order to find a PC with a CD drive and review a set of unfamiliar computer documents.
- Second, in order for this information to be easily read in an emergency situation, it is also easily read by anyone who steals or even simply has access to a person's wallet. Because it's a CD, it's also not clear exactly what data is on the record; leaving seniors and families caring for aging parents to wonder what information is potentially disclosed.
- Additionally, the currency of the data may be questionable. Frequent health and medication changes are common in older adults and this approach requires notification back to the provider, payment of an update fee, and the reissuing of the wallet CD. Allowing reasonable times for such activity, it could be very difficult to keep this up to date.
- Even small scratches from "wallet wear" on the CD can render it unreadable. Something that wouldn't be readily apparent until the CD was checked in a computer drive. Often, I fear, at the time the information is most needed.
- Lastly, the completeness of the data may be in question as it relies on the patient, often a senior with depression or memory loss, to report the activities of the disjoint senior health care system.
For emergency situations, clients are given a Ready Reference Card which contains all the key medical information and alerts. This PHI easily folds to the size of credit card for wallet use and multiple copies can be kept in other key areas, for example in a specially identified pocket on the client's refrigerator where emergency personnel are trained to look.
Because the Ready Reference is a paper record it is immediately available to emergency personnel in settings where a CD reader may not be at hand such as the senior's home, as shopping center, and so on. It is also quick and very inexpensive to reprint when updates are needed.
The point here is not that technology is bad. On the contrary, technology enables both of these solutions. We should put it to work in the most effective ways we can devise for seniors and their families.
Not to be out done by the Navigator development team, the SCANS team is continuing their "rolling release" of V1.3. SCANS is the Senior Care Navigation System that provides geriatric care managers with expert advice, best practices, and practical tools to help families with the well-being or their parents.
The June edition of V1.3 includes 26 new resources, process, or tools. The list includes items like these:
- Death in the Home – Information for Caregivers
- Tips for Alzheimer Caregivers
- Delirium vs. Dementia
- Transitioning an Individual with Dementia into a Facility
- Member Portal Instructions
- Continence Education – Constipation
- Urinary Incontinence – When to Seek Immediate Medical Attention
- Crime Prevention Education for Older Adults
- IADL (Independent Activities of Daily Living) Education
- Physical Therapy and Occupational Therapy
- My Medicare Matters
- Advance Directives for Mental Health Treatment
- Drug Review and Side Effects
- Geriatric Friendly Pharmacy
- Medicine Reconciliation: Brown Bag Consultation
- Feeding Tube Education
- Special Diet Needs Education
- Defibrillator Education
- Diabetes Education
- Fibromyalgia Education
- Pacemaker Education
- Physician Planner Case Note
- Alternative Living Options Education
- Speech Therapy Education
- Social Participation Barriers
- Social Support Plan
As a caregiver, the responsibility for decisions regarding your parent’s care falls to you. Often you wish you could discuss the options, choices and next steps with your parent, just as you discussed so many choices in the past…where to go to college, where to have your wedding reception, which neighborhood to select. But parents with Alzheimer’s cannot help with current decisions as their ability to reason, compare and choose has been ravaged by the disease. Sadly, dementia robs them of their ability to chart their own course.
So, what should caregivers do when faced with a variety of paths – how do you know how to choose what is best for your parent? How do you know when a parent’s living environment is no longer safe? How do you know when a parent needs more assistance?
Here are a few suggestions:
- Pay attention to your parent – they may be confused, but they will give you clues when things aren’t going well. They may seem more agitated, confused or disoriented. Their routine may change and a situation that has worked well in the past, now poses problems. For example, they may no longer want to eat dinner because they either can’t remember where the Assisted Living Dining Room is located, or they are afraid to leave their apartment.
- Check in with their caregivers – have other family members, a companion, assisted living staff or adult day care workers noticed a change in your parent? Are they concerned?
- Take your parent in for a check-up – have the Doctor evaluate your parent and review their medications and mental and physical health.
- Review your parent’s ability to complete Activities of Daily Living – things like bathing, dressing, continence, mobility, feeding. Has there been a change in their ability to do these things?
- Engage a Geriatric Care Manager – have them conduct an independent assessment to provide an unbiased view of the situation.
Once you have gathered the above information, spend time thinking and talking to others you trust about the findings. Choose the next step based on what you think is best for your parent at this moment in time. For instance, if you determine that they need more assistance, think about the pros and cons of providing additional assistance in their current environment vs. moving them to a new environment such as a Memory Care Unit. There is no “right” decision. Take comfort in the fact that you have been both thorough and thoughtful when you made the decision. Always remember that your parent is better off when you address concerns as they arise vs. postponing decisions until a crisis arises.
The SCANS content team headed by Jean Bandos along with the development team announced today that the SCANS Version 1.3 - May release is now available. SCANS Version 1.3 is a major content release to the SCANS Knowledge Base.
In order to make more real-world tools for eldercare available more quickly, Jean and the team have devised a "rolling release". For 3 months beginning in May another group of resources, processes, and tools will be made available to geriatric care managers at My Health Care Manager and our affiliates.
The May release contains 57 new and/or revised resources, processes and tools. Some sample items include:
- Behaviors and Alzheimer's Disease
- Grief Education
- Activities of Daily Living Education
- Depression and Alzheimer's disease
- Early Stages and Impact on Health
- Memory & Cognition Questions
- Memory Care Unit Checklist
- Memory Care Unit Education
- Mild Cognitive Impairment
- Sobriety Programs Resource
- Handyman Resource
- Private Handyman Contractor Checklist
- Smoke & Carbon Monoxide Detectors
- Daily Money Management Education
- Financial Planning Education
- Trust Education
- Verifying Funeral Arrangements
- Veterans Benefit Information
- Elder Law Resource & Checklist
- Medication Management Procedure
- Medication Reconciliation
- Polypharmacy
- How to Find a Pain Specialist
- Pain Education
- Pain Resources
- Pain Visual Analog Scale
- Arthritis
- Heart Failure
- Hypertension Education
- Family History - Cancer Education
- Family History - Dementia
- Family History - Diabetes Education
- Family History - Heart Education
- Seat Belt Education
- Cataracts Education
- Glaucoma Education
- Hearing Aid Education
- Sensory Changes
- Assistive Devices
- Hospice Education
- Spiritual Connections
Be sure to visit Jean's blog, click here.
If you were able to watch, please share your thoughts about ‘The Alzheimer's Project’ at http://alzheimers.infopop.cc/eve/forums and here on my blog. The Alzheimer’s forum page has several opportunities: not only can you discuss the project, but it also has forums for those who have Alzheimer’s Disease, questions about medication treatments, caregiving, and forums in Spanish.
Remember that Alzheimer's is not a normal part of aging – it's a progressive and fatal disease. Every 70 seconds someone develops Alzheimer’s and now Alzheimer's disease is rated the seventh-leading cause of death.
If you are assisting someone with memory loss or Alzheimer’s Disease, speak with your loved one’s health care provider and visit www.alz.org to learn more on how to support yourself and your loved one.
HBO is doing a documentary series on Alzheimer's starting this Sunday, May 10. Titled 'The Alzheimer's Project', the series is comprised of four parts.
- The Memory Loss Tapes
- Grandpa, Do you know who I am? (with Maria Shriver)
- Momentum in Science
- Caregivers
A national survey completed in conjunction with The Alzheimer's Project found that 54% of the US population has been affected by some way in Alzheimer's. With such a huge impact on our society, I encourage health care providers, caregivers, seniors, and anyone else affected by Alzheimer's or a loved one's cognitive decline to watch this series.
The website has great information, but please make sure to ask your health care provider if you have questions. A geriatric care manager can also help caregivers and seniors address issues associated with Alzheimer's and cognitive decline.
For more information on the series, visit http://www.hbo.com/alzheimers/index.html.
To watch the supplemental series, visit http://www.hbo.com/alzheimers/the-supplementary-series.html.
Caregivers for those with cognitive decline or Alzheimer's can find free help from their local Alzheimer's Association. Whether you're looking for ways to better communicate with someone with Alzheimer's, ways to reduce your caregiver stress, or even seeking other local resources, the Alzheimer's Association is a great place to start your search.
Local Alzheimer's Associations often give conferences for caregivers. Topics often covered include communication, home safety, and well-being. Presenters have extensive experience in geriatrics and caregiving topics. In addition, you can connect with other caregivers for support.
There will be a caregiver's conference on May 15th in Indianapolis, and I encourage you to attend. For more information, visit the local Alzheimer's Association website.
For information on events in your city and state, visit the national Alzheimer's Association website.
**The following post is from my guest blogger, Natalie Langley, MSW. She is a Geriatric Care Research Analyst for SCANS (for more on SCANS, please see Eric Tinsley's blog by clicking here).**
There are several barriers that can impact the older adult’s ability to achieve good nutrition. The following checklist can help to ensure older adults are getting the proper nutrition.
Determine if there is a problem that impairs their ability to eat:
- Have a physician/pharmacist review side effects of medications.
- Are their teeth/dentures in proper condition?
- Are there any physical limitations relating to pain and arthritis?
- Is there a decrease in a sense of smell and taste?
- Are finances a barrier?
- Is their eyesight failing?
- Do they have weakness and are not able to carry grocery bags?
- Is forgetfulness or dementia present?
As a caregiver or an older adult, make sure to enlist people and programs within the community to help with meal assistance. One way is to contact your local Area Agency on Aging for meal programs for older adults, such as Meals on Wheels. This program offers deliverable meals for older adults in their homes. For a list of local Area Agencies on Aging, you can visit www.n4a.org.
Another good resource for meal assistance is Seattle Sutton's. This is an Illinois based company, but they have locations everywhere. They offer healthy, prepared meals for a reasonable price. To find a location near you, please visit their website at http://www.seattlesutton.com/.
In working with seniors and their families, end of life care issues always come up. It is a hard decision for the senior and families to make end of life care decisions, for example, whether to continue treating an illness or disease, implementing palliative care, or inserting a feeding tube. These difficult decisions can often be made ahead of time by the individual via a Living Will. Living Wills allow individuals the ability to document their end of life wishes, treatment preferences, and care options. Any person over the age of 18, who is considered competent to make their own decisions, is able to complete a Living Will. Living Will forms can be found at your local library, the internet, or an attorney's office. Some states develop and recognize state-specific Living Will forms. To download your state's specific advance directives form, check out Caring Connections.
The most difficult end of life decision to make is whether to insert a feeding tube or not. A recent article from Health Behavior News Science, addresses recent studies on this issue. For people with Advanced Dementia or degenerative dementia, the body is unable to metabolize food properly due to the brain damage. The biggest fear for families is wondering if their loved one is "starving to death" or experiencing pain from hunger and thirst. Hospice studies have indicated that few people experience this type of pain. And if pain is exhibited it is often alleviated with palliative care and pain management. In my career, I have had several physicians state that due to the brain damage and with the body going through the end of life process, that our bodies do not feel hunger or thirst. But will we really ever know the answer to that question?? My motto as a geriatric social worker has always been, if I've made someone as happy and as comfortable as possible while they are here with us then I've done my job. What I do know is that the decision to place a feeding tube is an individual decision and each person's situation should be considered separately.For more information on studies, reviews of health care interventions, and evidence of clinical trials, check out the Cochrane Collaboration.
According to the latest report from the Alzheimer’s Association, the total health care costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older. It is reported that there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By 2010, it is estimated that there will be nearly a half million new cases of Alzheimer’s each year. Currently we know that Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older. My next blog will cover the newest focus for Alzheimer’s: early detection and intervention.
My Mother has declined precipitously during the past six weeks. We’ve watched helplessly as her confusion increased, her mobility worsened and her sense of time and place evaporated. Yet, a routine Doctor’s appointment and lab work did not reveal any treatable physical changes.
Yet, everyone around her noticed the decline – my sister, the companion, her Health Care Manager (a geriatric care manager from My Health Care Manager) and the nurses at the Assisted Living facility. We were saddened to see my Mother struggle with this new stage of life and worked together to offer additional support. We all ASSUMED that this was the natural progression of the dementia.
Our Health Care Manager was puzzled by what my Mother was experiencing. She had worked with many, many seniors and felt that my Mother’s cognitive decline did not fit the typical pattern. She felt that the changes my Mother started to experience happened overnight vs. being a gradual process. It bothered her, so she sent a letter to my Mother’s physician and explained her concerns. This led to a conversation between my Mother’s Doctor and the Health Care Manager. As they reviewed my Mother’s case, a light bulb went off. My Mother had a medication change in December….was it possible that the med change was negatively affecting her current physical and mental state? Was it possible that the changes we’d noticed were not necessarily caused by the next stage of the dementia, but a medicine interaction?
Thanks to the Health Care Manager’s detective work and follow up with the health care provider, we’ve stopped the new medicine that was added to my Mother’s care plan in December. We have our fingers crossed that we will see a difference and that some of the decline will be reversed. It is possible that there are other causes – a series of small strokes, for example. But for now, we are addressing what the Doctor thinks is the most likely cause.
We’ve learned a good lesson. Never assume that even small changes are “normal” …question everything! And seek professional help whenever necessary.
Staying calm is important. 90% of the way we communicate is nonverbal. Keep in mind that people with dementia will better understand you when you communicate nonverbally e.g. gestures, showing them what you want to do, facial expressions, gentle touch, etc. Because people with dementia rely on emotions and feelings, they will respond to your emotions. So if you are rushed or anxious, they will pick up on that emotion and will respond by being anxious themselves.
Try to identify what is causing their anxiety. Are they tired? Are they hungry/thirsty? Are they uncomfortable? Do they have to use the restroom? A lot of times, it is trial and error for caregivers in trying to communicate with their loved ones. But, keep up the good work! Your loved ones appreciate your calm and loving nature!
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George Slater