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.

We are hearing more and more about the older adults being taken advantage by a scam artists, being victims of violent crime and even human interest stories of seniors being found alone, malnourished and unable to care for themselves.  But what exactly is elder abuse? 

According to the National Center on Elder Abuse (NCEA),  elder abuse is any form of mistreatment that results in harm or loss to an older person. It is generally divided into the following categories: 

1. Physical-  physical force that results in bodily injury, pain, or impairment. It includes assault, battery, and inappropriate restraint.
2. Sexual- there is non-consensual sexual contact of any kind with an older person
3. Domestic Violence- an escalating pattern of violence by an intimate partner where the violence is used to exercise power and control
4. Psychological- the willful infliction of mental or emotional anguish by threat, humiliation, or other verbal or nonverbal conduct.
5. Financial- the illegal or improper use of an older person's funds, property, or resources. 

Other terms you may hear about are 'neglect' (failure of a caregiver to fulfill his or her care giving responsibilities) and 'self-neglect' (failure to provide for one's own essential needs.) More detailed information can be viewed at www.preventelderabuse.org/elderabuse/elderabuse.html - NCEA.

The problem of elder abuse is large and is also under-reported.  In a National Incidence Study on Elder abuse, approximately 450,000 elderly adults experienced abuse in 1996. If self neglect had been included, it would have risen to  551,000. The NCEA Estimates of Prevalence in the U.S.

• "...between 1 to 2 million Americans age 65 and older have been injured, exploited or otherwise mistreated." 
• One in 14 incidents in domestic settings (excluding self-neglect) are believed to be brought to the attention of authorities.
• In overall reporting of financial exploitation, one in 25 cases suggests that there may be five million financial abuse cases.
• For every case reported to authorities, an estimated five cases of elder abuse go unreported.

What can you do? You can enhance the awareness of elder abuse. In most states, it is required that health care professionals report suspected abuse. But even if it is not mandated is the right thing to do.  If you would like more information on mandated reporting, visit http://elder-law.lawyers.com/Elder-Abuse.html.

Also, educate yourself.  The Hartford Foundation Institute for Geriatric Nursing has created a tool to document and assess for elder abuse.  It can be found at  www.hartfordign.org/resources/education/tryThis.html. 
It can assist you in assessing and summarizing abuse and neglect concerns by assessing the senior’s appearance, indicators such as bruise and/or fractures- or with self neglect malnutrition and/or signs of depression- or in areas of exploitation, where the senior’s monies have been mishandled. 

The key is to be aware, seek information, and help the seniors preserve their dignity and their rights.  Let’s keep our seniors safe.

To read our special Update on Senior Fraud, please click here.

There is no easy way to confront your loved one about their driving skills – especially when they view it as their last means of independence. But yet we hear horror stories of older adults causing a terrible accidents. We wonder ‘will that be my parent? When do “I “ step in and take their keys?’ Then we ask questions and get answers like “just hide their car keys” or “tell them the car is in the shop and they will forget about driving!” You know, they don’t forget and they find those hidden keys…

Then we expect their physician to magically have the answer to this difficult decision. In reality, there are no easy decisions or ways to address this most difficult issue. But the Hartford Financial Services Group, Inc. and the MIT AgeLab conducted a research study and created a guide to help people dealing with this specific situation http://www.thehartford.com/alzheimers/.

The Hartford Brochure  - “At the Crossroads” is a wonderful resource for anyone who is having conversations and/or thoughts about stopping a person with dementia from driving (http://www.thehartford.com/alzheimers/brochure.html). This guide was developed to assist people with dementia and their families prolong independence while encouraging safe driving. http://www.thehartford.com/alzheimers/

This guide provides suggestions for monitoring, limiting, and stopping driving while addressing the following areas:
• Why dementia and driving is a difficult issue
• Assessing concerns about driving behavior
• Monitoring driving behavior
• Easing the transition from driver to passenger
• Having positive and productive conversations
• Seeking help from outside sources
• Understanding how family relationships affect driving decisions
• Advice from caregivers who made this decision

The guide also covers many warning signs including but not limited to a decrease in confidence while driving; difficulty turning to see when backing up; easily distracted while driving; incorrect signaling; and scrapes or dents on the car, mailbox, or garage.

A key recommendation is to document and share with other family members and health care providers the frequency, type, and severity of accidents/incidents and any patterns of change. Remember that everyone has isolated incidents, but it is when there are patterns that conversations and decisions need to be made. However, if your loved one is confusing gas and break pedals or stopping in traffic for no apparent reason – it is time for immediate action. 

These additional sites may also assist you:

• American Occupational Therapy Association [301-652-2682]
  www.aota.org/olderdriver
  Excellent general information, self assessments, and important links
• National Highway Traffic Safety Administration [1-888-327-4236]
  http://www.nhtsa.dot.gov/
  Has fliers about many medical conditions that affect driving

Family members of aging parents who have dementia or Alzheimer's Disease have a difficult job.  Individuals with dementia and Alzheimer's often show changes in personality, emotions, and social behavior.  These changes are common symptoms of the disease and occur with the cognitive decline.  Family members often feel a sense of ambivalence, having both positive and negative feelings toward their aging parents.  In a 2007 USA TODAY/ABC News/Gallup poll, "Slightly less than half of those [family members] providing help say it has caused them some stress or a great deal of stress." (USA TODAY/ABC News/Gallup poll, May 24-June 3, 2007).  Feelings of anger, resentment, and guilt are all common among family caregivers.  Lack of assistance and support from other family members and lack of time can all contribute to these feelings.  This person is your mother or father whom you love, and your feelings of anger and resentment can cause feelings of immense guilt.  Family members often express depression and a sense of sadness watching their once independent and capable parent decline.
You are not alone!  Most family members caregiving for a parent of dementia or Alzheimer's express these same feelings.  It's important to care for yourself!
Here are a few tips for caring for yourself:
1.  Take time for yourself!  Set aside time each week to go to a movie, out to dinner with a friend, shop by yourself, take a yoga class, read, golf, enjoy time by doing your favorite hobby, etc.
2.  Deep breathing exercises.  When your loved one has you frustrated, try to take deep breathes and de-stress.
3.  Set up a schedule with other family members to help out with mom/dad.
4.  Enlist the help of friends, neighbors, church members, etc. 
5.  Maintain connections with friends and your community.  Caregivers often isolated themselves from others and focus all time on mom/dad.
6.  Join a caregiver support group.  See the Alzheimer's Association for local support group information. 
7.  Educate yourself.  Learning about dementia and Alzheimer's Disease will help you understand the impact of cognitive decline on everyone involved.
8.  Call on a geriatric care manager for assistance.
9.  Be aware of your stress level.  Know your stress level and know when it's time for a break.
10.  Don't be afraid to ask for help.  Caregiving is a 24/7 job and even the best caregiver needs a break!

For those of us caring for aging parents, there is information, support, and shared experiences to be found in the world of books.  The New York Times just published a review of a new book called 'My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved Ones'.  Written by Dr. Dennis McCullough, a practicing geriatrician at Dartmouth Medical School, it champions taking a different approach when treating older patients.  Gone is the focus on high technology and strong medicine, with 'slow medicine', the focus is on family-centered care, less invasive testing and procedures, and exploration of all options (i.e. depression would not automatically be treated with strong drugs, but first one might see if having a pet or hiring a companion could relieve the depression). 

While this approach may not work for everyone, and may not be preferred in all situations, the book is worth a read for those with aging parents.  It's not all about medicine- as the review points out, some of it is simple advice like "it is always the right time to say ‘thank you’ and ‘I love you’ ", and a reminder to really listen to your aging loved ones- their voice can often tell you more about their health or state of mind than their words or actions.

To read the review on The New York Times website, click here.
To view the book on Amazon, click here.

Every so often we come across a product that turns out to be really useful in caring for aging parents.  Sometimes these are even fun for the family, as well.

One such product is the Presto Printer.  This printer works by itself to receive emails with no special Internet connection required.  There is a corresponding service that assures that no SPAM gets through and that it's easy to send messages, pictures, and more.  For more details click here for a PDF brochure. 

This can really help the family stay in touch and reduce feelings of isolation for seniors - improving well-being.  It's also away for grandchildren or even great grandchildren to take an active role in caregiving.

We've had enough success with this, we're able to pass along a special offer from Presto - two months free service.  Go to www.presto.com/myhealthcaremanager to take advantage of this deal.

As the holidays come to a close, are you experiencing the holiday blues? Are your parents? While you where visiting your aging parents did you notice any signs of depression or mood changes? It is known that suicide rates increase over the holidays. But did you know that between 5% to 20% of persons over age 65 living in the community suffer from depression (2002, Primary Care Geriatrics)?

Depression is a common disorder among the elderly but is not a normal part of growing old.  It is one of the diagnoses that continue to go untreated. There are many reasons for this, one being that physicians have the tendency to focus on illnesses affecting the body instead of the mind. Another key reason is that the older adult was taught to be independent and feel that they should take care of themselves and "their” problems. Your parent may feel that they should not “bother” their physician or you with their feelings of loneliness/depression. As the adult child, you may feel that you do not have the right to intrude on your parent’s privacy.  But, if your parent has any of the common depressive symptoms such as irritability, frequent crying, loss of interest or pleasure, weight gain or loss (especially weight loss), insomnia, fatigue, decrease in ability to concentrate, feeling of hopelessness and/or suicidal thoughts, please assist him/her in making an appointment with his/her physician. If you can, go with them to the appointment and take a list of symptoms/ concerns to share with the physician.  Reinforce that these depressive symptoms are treatable and that he/she deserve to feel better, to have more energy, and to continue to age in place.  

 One day I googled “depression in the elderly” and received 369,000 results- here are some resources that might assist in you in your search.

 

Resources:

 

The geriatric depressions scale is a self - administered scale that can measure depression in the elderly.

 

GERIATRIC DEPRESSION SCALE (GDS)

 

CHOOSE THE BEST ANSWER FOR HOW YOU FELT THIS PAST WEEK.

                                                          

CIRCLE ONE (YES OR NO)

 

  1.  Are you basically satisfied with your life?     Yes     No

  2.  Have you dropped many of your activities and interests?     Yes     No

  3.  Do you feel that your life is empty?     Yes     No

  4.  Do you often get bored?     Yes     No

* 5.  Are you hopeful about the future?     Yes     No

  6.  Are you bothered by thoughts you can't get out of your head?     Yes     No

* 7.  Are you in good spirits most of the time?       Yes     No

  8.  Are you afraid that something bad is going to happen to you?     Yes     No

* 9.  Do you feel happy most of the time?     Yes     No

 10.  Do you often feel helpless?     Yes     No

 11.  Do you often get restless and fidgety?     Yes     No

 12.  Do you prefer to stay at home, rather than going out and doing new things?     Yes     No

 13.  Do you frequently worry about the future?     Yes     No

 14. Do you feel you have more problems with memory than most? Yes No

*15. Do you think it is wonderful to be alive now? Yes No

 16.  Do you often feel downhearted and blue?     Yes     No

 17.  Do you feel pretty worthless the way you are now?     Yes     No

 18.  Do you worry a lot about the past?     Yes     No

*19.  Do you find life very exciting?     Yes     No

 20.  Is it hard for you to get started on new projects? Yes     No

*21.  Do you feel full of energy?     Yes     No

 22.  Do you feel that your situation is hopeless?    Yes     No

 23.  Do you think that most people are better off than you are?     Yes     No

 24.  Do you frequently get upset over little things? Yes     No

 25.  Do you frequently feel like crying?     Yes     No

 26.  Do you have trouble concentrating?     Yes     No

*27.  Do you enjoy getting up in the morning?     Yes     No

 28.  Do you prefer to avoid social gatherings?     Yes     No

*29.  Is it easy for you to make decisions?     Yes     No

*30.  Is your mind as clear as it used to be?     Yes     No

  

*Appropriate (nondepressed) answers = yes, all others= no... or count number of CAPITALIZED (depressed) answers

Score: _____ (Number of "depressed" answers)  

 

            Normal               5 +/- 4

            Mildly depressed    15 +/- 6

            Very depressed      23 +/- 5

________________________________________________________________

 

References:

1.  Yesavage JA, Brink TL, Rose TL, et al.  Development and validation of a geriatric depression rating scale:  a preliminary

report.  J Psych Res. 1983; 17:27.

 

2.  Sheikh JI, Yesavage JA.  Geriatric Depression Scale:  recent evidence and development of a shorter version.  Clin Gerontol.

1986; 5:165-172.

The Geriatric Depression Scale may be used freely for patient assessment according to the authors

 

http://depression.about.com/od/elderly/Elderly_Depression.htm

http://www.consultgerirn.org/topics/depression/want_to_know_more

http://nihseniorhealth.gov/depression/aboutdepression/01.html

 

Caring for someone with Alzheimer’s Disease (AD) is always a challenge. How do you take care of your loved one and still enjoy the holidays? The National Institute on Aging has many tips to assist you, especially during this holiday season. Some key tips are to 1) Keep or adapt family traditions that are important to you. Include the person with AD as much as possible 2) Recognize that things will be different, and have realistic expectations about what you can do 3) Encourage friends and family to visit. Limit the number of visitors at one time, and try to schedule visits during the time of day when the person is at his or her best 4) Avoid crowds, changes in routine, and strange surroundings that may cause confusion or agitation.

http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm

 

Always try to remember to do you best to have enjoy the holidays and try to find some time for the holiday things you like to do.

 I came across The Caregivers' Bible (Source unknown)  and wanted to share it with you as the holidays are approaching. 

• Maintain social contacts and as many activities as possible.
• Formally and in writing schedule respite time for yourself on a daily or weekly basis. Even a few minutes a day can make a difference in your outlook. Stick to that schedule.
• Involve other relatives in the care of the care recipient early on, including multiple-day care over weekends and holidays.
• Do not martyr yourself. No one should expect to provide all care every day without help. If you can, get a job or activity away from home for periods of time.
• Make sure that children and siblings understand the disease. Let them assume caregiving duties for short periods, so they experience first-hand the stress you experience as a caregiver. They, too, will suffer doubt, denial, guilt and anger, and the fury may be directed at you.
• Guilt and anger are normal emotions. Recognize them for what they are, and avoid acting on them. Anger usually accompanies a sense of guilt.
• The incidence of headache, insomnia, backache or other physical symptoms during caregiving can be stress-related, stemming from unresolved anger, guilt and/or depression. Nearly all caregivers are physically affected by the care recipient's illness. Face that fact and accept it. To remain an effective caregiver, you must take time out for yourself.

A recent study has suggested that correcting vision problems in seniors residing in nursing homes may reduce their symptoms of depression.  Not only were their symptoms of depression reduced, but also their involvement in social interactions, activities and hobbies, and reading increased.  Of course this doesn't pertain to only those seniors living in retirement communities.  Correcting poor vision can be a relatively easy and quick way to positively affect quality of life in the short term.  To read the study synopsis, please click here.  The study is specific to refractive errors, but other common conditions in older adults include glaucoma, macular degeneration, and cataracts.

While I've already mentioned the link between falls and certain types of loss of vision, this is one more reason to make sure the older adults in your life have recently had their vision checked by a health care professional.  Aging can often mean a change in vision, and it is important to proactively address this, as some common conditions can be treated (e.g. the refractive errors in the study, cataracts, etc).  Caregivers may often be the first to recognize the signs, and your loved one's geriatric care provider or health care professional can recommend a specialist if your loved one does not have an optometrist or eye doctor.

With the Hollywood writers strike, some of those writers may be treating this time as a much-needed break from the daily grind, as they are only required to work 20 hours a week manning the picket lines.  Unfortunately, as most caregivers know, caring for aging parents is a full-time job.  And this is often on top of the full-time hours put in at a paying full-time job.  It can often be tiring, emotionally and financially draining, and very hard.

 

For family caregivers that are in need of a well-deserved respite, don’t hesitate to ask for help...  Don’t hesitate to take a well-deserved break!  Accept the help that your family and friends offer or hire outside help to give you a few hours (or a few days) of help each week.  Caregiver burnout is real – especially for working caregivers.  Understand that you must first take care of your own health, and that asking for help or accepting help may make you a better caregiver in the long run by reducing your stress levels and allowing you some respite.

 

Providing care for a loved one, organizing their health care and managing appointments, checking on their home safety, spending time with them to prevent isolation, AND doing all of the other duties that come with the territory is extremely time consuming, sometimes confusing, and sometimes stressful.  If you find yourself ‘in over your head’ or just needing some advice, you may consider enlisting the help of a geriatric care manager.  Geriatric care managers can help facilitate communication within your family, give you advice on avoiding caregiver burnout, and offer tips and tricks to help you manage the health conditions of your loved one (whether it be helpful ways to remind your mother with diabetes to check her blood sugar, tips on communicating with a senior suffering from Alzheimer’s, ways to improve your father’s quality of life or help manage your uncle’s arthritis, or a better way to manage the multiple medications prescribed to your grandmother).

“Taking Steps to End Alzheimer’s” was extremely successful in Indianapolis. My Health Care Manager's Team stepped up and supported this event, not only financially but in the spirit of raising awareness.  It is estimated that there are 4 million Americans with Alzheimer’s and that number is expected to grow dramatically impacting millions of caregivers across the country. What is one of the most important things for caregiver to do. You should identify Alzheimer’s disease as early as possible and take care of yourself.   Remember the onset of the disease is gradual with loss of short-term memory, mood and/or personality changes. Your loved one may have difficulty finding the right word or not able to recognize objects, he/she may forget ordinary things like a pencil, turning off lights or the stove, closing windows, or locking the door. Be aware as a caregiver that this disease can cause emotional, psychological, and physical problems- causing social isolation for the caregiver as well as their loved one. Always remember, that to be able to take care of your loved one, you need first to take care of yourself. Identify your support network and stay connected with others.  Several resources for caregivers are: The Alzheimer’s Association, www.alz.org ; education and referral center,s The Family Caregivers Alliance www.caregiver.org ; and the National Family Caregivers Association, www.nfcacares.org.

So what exactly is in a Personal Health Record (PHR)? 

You won’t be surprised to know that the answer varies depending on who you ask.  Let’s start by looking at what My Health Care Manager includes in its PHR.

 

We have identified 17 dimensions to examine as part of initializing a PHR.  These are:

1. Demographic:  General demographic information including but not limited too the senior’s current living and marital status; accessibility to bathroom, bedroom, and laundry; and work/volunteer history. 
2. Family: Family members deceased and living.  Family health history and availability.
3. Social support:  The family’s/friends’ level of support, communication techniques, and the senior’s engagement in social activities.
4. Representatives/Key Contacts: Individuals that the senior has identified to have permission to health and/or financial information, including the level of information they may access and the manner in which the information can be shared.
5. Financial:  The senior’s perception of his/her financial needs and if additional assistance is required to support health or alleviate stress.
6. Spiritual:  The senior’s perception of his/her spiritual needs and level of comfort/peace with current health status.
7. Legal: Arrangements for an individual to act on the senior’s behalf including the status and copies of the senior’s advance directives, funeral, and/or burial/cremation arrangements.
8. Insurance:  Current insurance information and identified gaps or needs for continued education.
9. Support Services:  Multiple service providers and the level of communication between the providers.
10. Caregiver Support: The stress level and needs of the caregiver.
11. Physical Health:  The senior’s past medical history, treatment plans, and current health status - capturing chronic illnesses, chronic pain, incontinence, weight loss/gain, nutritional status, and sleep habits.   
12. Functional Health Status:  The senior’s perception of and satisfaction with his/her health status while assessing the senior’s physical functional status including activities of daily living, balance, ambulation, assistive devices, and sensory status.
13. Emotional/Psychological:   The cognitive, emotional, and behavior status of the senior including screens for cognitive impairment, anxiety, depressive symptoms, and substance abuse.
14. Medication History:  Medications list, multiple providers, multiple pharmacies,   allergies, polypharmacy, and medication administrative needs. 
15. Home/Residential Environmental & Safety Assessment:  Visual assessment of the senior’s environment.  Assessing fall risk, elder abuse, disaster plans, fire/burn prevention, crime/injury, injury prevention, communication system, and support network.          
16. Preventive Health Activities:  Preventative recommendations and attending health screening activities. 
17. Wellness: The senior’s understanding of activities that promote improved health status such as wellness classes, tobacco use cessation, and/or intellectual stimulation.

This information can be gathered and assessed by an individual, a caregiver, or even a Health Care Manager.  We use a 3 ring notebook to collect and organize this information so that it can easily be updated and kept current.  The binder is easily taken along on medical provider appointments and is large enough to be difficult to misplace.