My last post covered some of the key points to consider if your aging loved one has dementia and may still be driving.
To objectively assess the older adult’s ability to drive the family and/or support systems should document and then share with others:
- The frequency, type and severity of accidents/incidents
- To reinforce that while everyone has isolated incidents; when there is a pattern, conversations about driving and decisions need to be made
- Take immediate action when the older adult is confusing gas and brake pedals and/or stopping in traffic for no apparent reason
If needed, an occupational therapist can provide assessment and remedial driving training. A professional geriatric care manager can help you locate a local resource. Other resources to assist in assessing driving skills are:
Do you ever find yourself having a hard time concentrating? Do you get worried or anxious about things in your life? Is it difficult for you to stop worrying? We all have moments in our life when we are worried about things and usually our worry goes away. However, for some individuals they do not go away and may be experiencing anxiety. Experiencing stress and anxiety can be very taxing for both the older adult and the person caring for them.
The National Mental Health Association offers 12 steps that can help people cope with stresses and anxiety:
- Set realistic goals and have realistic expectations
- Let others share the responsibilities of special tasks
- Live and enjoy the present; look into the future with optimism
- Do not compare one day with the good ol' days of the past. This can and often does lead to disappointment.
- Those who are lonely should try and volunteer some time to others
- Limit drinking - excessive alcohol can increase feelings of depression
- Get exercise or do some physical activity regularly
- Spend time with supportive and caring individuals
- Reach out and make new friends
- Make time for yourself
- Find activities that are free in the community
- Keep tracking of your financial spending. Over spending can lead to stress and anxiety when the bills arrive.
If you still feel you are anxious or can't stop worrying, please get an appointment to your primary care physician to discuss them with him/her so you both can work together on how to alleviate feelings of anxiety.
Hoarding is a common behavior exhibited by older adults with later stage Alzheimer’s Disease, and many caregivers will see this behavior in their loved ones. Some seniors hide belongings, some won’t throw anything away and some spend lots of time rummaging through drawers, closets, even refrigerators. In many cases, seniors with Alzheimer’s engage in all of these activities.
Experts have suggested that seniors with Alzheimer's engage in these behaviors because they:
- were impacted by the Great Depression and “save” things just as their families did in the past
- come across an item, don’t recognize it, don’t know why they have it, and don’t know what to do with it and because they don’t want to ask someone about it, they hide it to get rid of it
- are fearful they are going to run out of something, for example - money, food, clothes – so hide these items from others.
During the past few weeks, I have been getting my Mother ready to move to a new apartment in a memory care facility. The new apartment isn’t as large as the old one, which meant that some furniture and personal items needed to be discarded or donated. This
became a good time to reorganize and go through the apartment contents to ensure that we moved the items she was currently using or had sentimental value. I thought this would be a relatively easy task, but I couldn’t have been more wrong. As I began the process of packing, I soon found items in strange places. For example, I found a set of silverware in my Mother’s dresser, framed family pictures in her purse and a shopping bag with shoes, figurines, and greeting cards behind the couch. I also learned to look through everything, such as old purses and jacket pockets, to make sure I didn’t give away anything important – and it’s probably wise for other caregivers to do the same. For example, I found my Mother’s Medicare card innocently wrapped in a scarf at the back of a dresser drawer.
As I continued to find more items, I realized there was a theme. The belongings hidden away were obviously things that were important to my Mother. The family pictures, the figurines that were passed down from my Grandmother, and the greeting cards my sister and I had sent through the years had all been carefully saved, hidden and protected. My Mother’s hoarding activities may be a “typical” Alzheimer’s behavior, but the treasures she chose to protect were mostly family mementos with great personal meaning.
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.
“Still Alice,” a wonderful novel written by Lisa Genova, is about a woman named Alice with early onset Alzheimer’s Disease. The author, who is a neuroscientist, weaves scientific and emotional details of the disease throughout the story. The story is told from Alice’s perspective – a 50 year old Harvard professor who begins to show symptoms of Alzheimer’s disease. The book follows her journey from her initial assumption that her forgetfulness is due to menopause, through medical exams and testing, to telling family members and friends of her diagnosis, to living a life she had not expected. As the story evolves, the reader learns how Alice feels as she struggles with day to day activities such as getting dressed, taking a walk and using her Blackberry. The reader also experiences the pain felt by family members who learn how to be caregivers for Alice while coping with the knowledge that they may have inherited the gene that causes the disease. The awkwardness expressed by former friends and colleagues jumps off the page as they struggle to interface with an Alice who is different from the Alice they remember.
The book is an emotional, honest read. It boldly examines the frustration, depression and decline that accompany an Alzheimer’s diagnosis. It explores Alice’s life over a three year period and is an honest, haunting and heartbreaking portrayal of life with Alzheimer’s. Yet, the book shares hope by including discussions of possible treatments. Most importantly, it teaches readers to view people with Alzheimer’s not as victims, but as people living their real lives.
“Still Alice” has received high marks from the National Alzheimer’s Association… the book is featured on their website (
www.alz.org). For more information visit
www.stillalice.com. I recommend that everyone read this book, as it puts a very human face on a disease that will shape our future.
A colleague handed me a flyer today from a local cardiac physician group for cool little wallet sized CD they provide their patients with key medical information on it.
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
All in all this is a good thing. It also points out some of problems with "high tech" solutions to emergency information.
- 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.
My Health Care Manager approaches this problem differently. Our geriatric care managers collect, review, and update information across all of a client's health providers. This Personal Health information (PHI) is then used to inform all providers engaged in the client's health. For example, each of the client's physicians receives the medication list initially and then again for every medication update.
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.
You have heard everywhere to see your physician regularly for your health and get annual exams, etc. Along with your physical health, it is important to have good “social health” too. The outcomes of being with friends or family have very positive effects on your health. The support of having friends or family can also help get you through tough times. Some benefits of being social may include:
- Mental and physical well being increase, along with self-confidence and reduced depression
- Improved cognitive abilities
- Reduced negative effects of stressful life events (loss of a job, death of a spouse)
- Improved cognitive abilities
- Reduced disability and mortality risk
So, grab a friend (or 2 or 3) and go do something fun together!
I've been seeing several ads for voice recognition phones, lately . The idea is to provide both the sound through the ear piece and a text display of what's being said. This can be a terrific tool for older adults with hearing problems. One example can be found at the CapTel web site.
This service can have impact on senior well-being in several ways. The example shown by most of the advertisers is reducing feelings of isolation by making it easier for grandparents to speak with grand kids and other friends and family. It can also play a very practical role in caring for aging parents, as well. Caregivers can communicate more frequently by adding phone conversations to face to face interaction. The text can also help assure that advice or instructions are more accurately understood.
These phones are another tool in the emerging market to help seniors who are living independently.
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
Stay tuned; the June release will include resources on incontinence, cognition, supporting services, and more processes.
Be sure to visit Jean's blog,
click here.
Many older adults experience some type of persistent pain. When this pain is left unaddressed, it can affect an older adult’s quality of life and may lead to decreased mobility, decreased social interaction, and depression. Yet, it has been reported by the American Medical Association (AMA) that 25% to 50% of community-dwelling seniors have pain that interferes with their ability to deal with daily functions, and 59 - 80% of nursing home residents experience persistent pain (AMA: Pain Management: Assessing and Treating Pain in Older Adults, 2005).
Why is pain not addressed adequately? Many older adults are reluctant to report pain fearing additional tests and/or bills that they cannot pay. Also, they want to be seen as "good patients" or do not want to waste the health care professional's time with complaints about pain.
For caregivers helping their aging loved ones, it is important to help the older adult understand that they need to report their pain and deserve to have their pain controlled. One way for older adults to communicate with physicians is to keep a pain journal and track the following: When they experience pain; how long it lasts; whether it is a burning pain, a stabbing pain, or an aching pain; whether it happens with movement; what makes the pain better or worse; and what activities, if any, the pain keeps the older adult from participating in.
For more information, you can contact the
National Pain Foundation or the
American Pain Society.
**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).**
Brrr, its cold outside, what can we do?
The winter months are often a barrier when it comes to being able to go outside and enjoy the weather. For seniors, this can restrict the ability to go outdoors for exercise and entertainment. Caregivers may be struggling to find activities for their loved ones to keep their spirits high during the winter months and avoid isolation. Below are some helpful ideas to help keep your aging loved one engaged.
- Reminisce with the person. Take out vacation, family, or wedding photo albums, and share memories
- Watch classic movies
- Play games or cards
- Invite friends/family over for tea and snacks
- Visit the library
- Have the health care provider recommend simple exercises for your loved one, which could help improve balance and mobility
- Attend a musical/play
- If arts and crafts are interests, go to the craft store and start a project (sew a blanket, paint a picture)
- Play CDs of all the person’s favorite songs
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.
Following the safety theme with older adults, I came across a great government site:
click here or visit
http://www.fsis.usda.gov/PDF/Food_Safety_for_Older_Adults.pdf. This 24 page PDF is a guide to food safety for those 65 years of age and older. It addresses the major pathogens that contribute to food poisoning. It also gives great tips on making wise choices, how to prevent food poisoning, and what symptoms to look for if you think you have food poisoning...
Nutrition is a key concern for older adults. Often as a person ages, healthy eating becomes a challenge. Social isolation, decline in taste, financial concerns, or just making bad decisions can cause weight loss - which impacts older adults' total well-being. Knowing what choices to make and what to look for can be instrumental in maintaining a healthy nutritional status. If your loved one has a weight loss of more than 10 lbs in a six month time frame, please contact the physician and encourage your loved one to address the concern with the help of the health care provider.
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!
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.
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.
Jacqueline Marcell (author and former professor) recently posted on the web the top 10 eldercare recommendations.
- 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.
- 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.
- Utilize available resources, like the Alzheimer's Association or the Area Agency on Aging.
- 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.
- 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.
- If your loved one has dementia, learn how to effectively communicate with them (see some of my past blogs).
- Validate feelings. Validating and acknowledging how a senior feels about their health and overall situation instills a sense of comfort.
- 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.
- Learn about your loved one's health conditions. Educating oneself prepares caregivers for being effective advocates.
- 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.
Alzheimer's Disease is a world of uncertainty for both the person affected and the family members. It's important to
create moments of joy within that disease and with that senior. Alzheimer's and dementias affect each person differently, some people have personality or behavioral changes, some lose brain functioning at a faster rate, etc.; their world becomes different. It is important for family members to pay attention and learn where their loved one is at. This is not an easy task for family members because the senior's memory maybe affected to where they no longer recall their wife or that they have children, etc. If we try to correct them, it causes more confusion, anger, sadness or depression for the senior. Try to put yourself in "their world".... I once stood in front of a mirror with a lady affected by Alzheimer's and she said "who's that old lady?" Instead of me saying that's you (since she did not recognize herself), I merely said "I'm not sure exactly, but it's a good thing we are two good-looking ladies." In her mind, she was in her mid-30s and could recognize herself in an old picture of when she was in her 30s, but if you showed her a picture of herself today, she didn't recognize herself. Another lady was taking all her clothes and other belongings and gathering them up and putting them into piles, stating she was getting ready for a garage sale. Instead of telling her it was the middle of winter and she wasn't having a garage sale, I started a conversation by asking her what she was going to buy with her garage sale money. She said a new car and some new clothes, so we talked about cars and shopping while I helped her "decide what goes and what stays". We had a great conversation and a fun time. It is difficult for family members to join in mom or dad's world because it is not "our reality." But it is their's. It's our turn to help create memories of joy. If their thoughts or actions are not physically harming to themselves or others, then just try to roll with where they are at. Correcting them or trying to bring them to "our reality" will only cause emotional anguish. The article,
"Finding Moments of Joy Helps Alzheimer's Patients" gives additional tips on how to create moments of joy.
To make effective use of any set of tools you need to combine them with process. In the case of caring for aging parents, the process is something you have to repeat over and over. The situation changes, health conditions like diabetes or cognitive concerns change, needs and desires change, and all of these play in to the decisions about the next course of action.
At My Health Care Manager we have defined, detailed and implemented processes at all levels of service delivery - over 100 in all. These include detailed flows, processing narratives, measures, entry
and exit criteria, responsibility identification, and more. At the core, however, these processes all revolve around this simple cycle.
If you are caring for a senior, consider adopting a process like this one and implementing changes in the top 3 (or fewer) areas of concern in each iteration. Clearly, trying to change too many things at once can actually be counterproductive. Any of us, especially if we're sick, depressed, or struggling with cognitive decline, can only impact a small number or areas at one time.
Understanding that this is a cycle with re-evaluation can help manage the sometimes overwhelmingly long list of things needing attention.
Eric Tinsley
Alan Stanford 
Jean Bandos
Karen Kelsey
Natalie Crohn
George Slater
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