Don’t miss the Colorado Chapter Alzheimer’s Association annual education symposium for caregivers, health professionals and individuals diagnosed with dementia. It will be held on October 30th at the Denver Tech Center Hyatt Regency from 7:30am until 4:30pm. Call 800-272-3900 to register. Opening keynote speaker will be Barry Petersen, CBS news correspondent and author of Jan’s Story about his personal journey caring for his wife living with Alzheimer’s. Closing keynote speaker will be Herb Magley, board member of the Oklahoma Chapter of the Alzheimer’s Association and caregiver for his wife with Younger Onset Alzheimer’s for 11 years. There will be numerous break out sessions that you can attend. Session topics include:
- The Need To Know Clinical Trials
- Living Well After A Diagnosis From Someone Who Knows
- Driving and Dementia Evaluations, Management and Legal Perspectives
- What’s The Connection Between Change and Grief
- The Power of Words
- Control Through Choice – Making Informed Decisions About Care and Treatment
- Practical Tips For Assisting Care
- What’s Love Got To Do With It? The Unspoken Challenge Of Providing Care For Someone You Really Don’t Care About.
It’s that time of the year again. November 9 is the annual all day Education Symposium available to the public on multiple topics about dementia and Alzheimer’s disease. This is the 26th year for this event. Local as well as national experts on Alzheimer’s and dementia will be offering breakout sessions at the Hyatt Regency Denver Tech Center. Current research, clinical trials, strategies for caregivers, and complementary health approaches are just some of the sessions that are available. Early stage to end stage will be covered. Many local support resources will be onsite. The closing session will include a conversation with Glen Campbell’s family members including a musical performance by his daughter.
Click here to view the full day agenda and instructions for registration. http://act.alz.org/site/Calendar?id=121841&view=Detail
Congratulations to the Boulder Walk to End Alzheimer’s teams and committee members! The most money raised for any first year Walk organization in the U.S.!
“We live our lives forward, but we understand them backwards.”—Soren Kierkegaard
A life review and reminiscing are two very effective therapeutic tools to use with individuals living with dementia. Below is a comprehensive list of suggested questions to get you started. This list was created by the Hospice of Cincinnati. Friends and family can help obtain the information during multiple sessions. You may want to ask the same question at different times in case new information can be retrieved as well as to confirm answers.
Childhood (birth-13 years)
- Location of birth:
- Formal experiences (spiritual/secular/education):
- What do you remember most about your parents?
- What do you remember most about your grandparents?
- Who took care of you?
- What are you favorite stories about your siblings?
- What is your favorite childhood memory?
- Did you have a favorite toy as a child?
- Did you have any pets? If so, what were they? What were there names?
- Who did you spend most of your time with as a child?
- Who had the most significant influence on you as a child?
Adolescence (14-21 years)
- Residence: Formal experiences (spiritual/secular/education/achievements/awards):
- Were you a good student?
- What did you do after school?
- What did you do in the evenings? On weekends?
- What was it like to be a teenager?
- Who was your best friend?
- What were your goals as a teenager?
- Who was your first love and how did you meet?
- Did you have a job as a teenager? What were your job duties?
- What were your greatest lessons at this age?
- Did you play a sport or participate in any activities?
- Who taught you how to drive a car? What was your first car?
- What was your favorite and least favorite thing about being a teenager?
- Do you have any funny/embarrassing stories from when you were a teenager?
- Did you vacation as a family? What was your favorite vacation?
Young Adulthood (22-35 years)
- Spiritual experiences:
- Educational achievements, awards:
- Marriage, children:
- Career choices, experiences, awards:
- Travels, national service:
- What was your main career?
- How did you choose your particular career path?
- Did you attend college? What college did you attend?
- Did you get married? When did you know you wanted to be married? What was your wedding like?
- Did you have children? What is your fondest memory about each of your children?
- How did you choose your children’s names? Were they named after anyone?
- What was the greatest thing you taught your children?
- What were your goals as a young adult?
- What was your favorite hobby? Did anyone share your hobby with you?
- Did you have any struggles as a young adult you had to overcome?
Middle Adulthood (36-65 years)
- Children, grandchildren:
- Career experiences, achievements, awards:
- Travels, national service:
- Did you have any children/grand children? What is your favorite story about each?
- What was the greatest thing you taught your children/grandchildren?
- What were your goals as an adult?
- What were your hobbies as an adult?
- Did you have any struggles as an adult you had to overcome?
- Did you have any regrets during this time?
- What were your fondest memories during this time?
Older Adulthood (66-99 years)
- Grandchildren, great-grandchildren:
- Career experiences, achievements, awards:
- Health challenges and outcomes:
- What is your favorite story about your grandchildren/great-grandchildren?
- What is your greatest accomplishment in life?
- If you had a chance to go back in time, is there anything you would have done differently?
- What was the happiest time of your life?
- What do you want your family/friends to remember most about you?
- What was your favorite holiday to celebrate? What is your favorite holiday memory?
- What is your favorite vacation spot? What was your favorite trip?
- Is there any vacation spot you would never go back to? Why?
- Is there anywhere you wanted to go but never got the chance?
- Is there any dream you wanted to pursue you never got around to?
- How do you most want to be remembered?
Megan Carnarius, Executive Director of Balfour Cherrywood Village in Louisville, Colorado has given us a gift for her 25th anniversary in the profession of providing care and training others affected by Alzheimer’s and other dementias. She has written a book entitled, A Deeper Perspective on Alzheimer’s and Other Dementias, that encompasses her many years of extensive knowledge and insight with a disease that touches many. Her practical solutions and humor provide proven solutions for most scenarios that family, friends and professional caregivers will encounter. As she says in her book, “understand the profound lessons and gifts dementia provides.” Several lectures and book signings will be occurring this month at Balfour locations. Lecture and Book Signing
A recent Denver news story has shocked many caring for individuals with Alzheimer’s disease and various forms of dementia. A serious incident with a fatality occurred between two residents living with Alzheimer’s while under the care of a corporate owned and managed memory care facility. Sadly, this is not surprising to many elder care advocates based on the current regulations for assisted living and especially memory care. In Colorado and other states there is not a required ratio for qualified care professionals to residents. Each community can determine how many staff they want to employ during a shift based on their subjective view of meeting the needs of the residents. Specific to this news story, both residents shared the same room even though it was known and documented previously by the care facility that there were serious physical and verbal altercations between the residents and no apparent effective corrective action was taken by the corporate care facility. The resulting outcome was traumatic with serious legal implications.
Stay tuned to your local news resource in Colorado for more information on this specific case as it develops. The Colorado Department of Public Health and Environment is conducting their investigation. For families in search of care facilities with strong reputations regarding their care environment please contact the Ombudsman office from the Area Agency on Aging which is part of the Denver Regional Council of Governments. Once a loved one is admitted to a community, please be vigilant on managing their care or hire an advocate to monitor the quality of care being provided.
If you are entering 2015 as a caregiver or a recently diagnosed patient, you may want to check out the multiple online health communities available for support, treatment options and inspiration. Membership is free. These web sites allow you to share your success with medication, medical providers, and strategies for managing symptoms. You can also learn from others who have firsthand experiences with your illness about helpful resources as well as suggestions on what to avoid. These online communities will play a role in helping you to make better informed decisions about your care plan.
Two of the more popular communities are Inspire.com and PatientsLikeMe.com.
These companies make money from advertisers and by providing research data to life sciences companies to enable them to develop medication, diagnostic tools, and medical devices to improve patient outcomes and quality of life.
For example, Inspire.com currently has 16 groups dedicated solely to caregivers. There is a group for caregivers dealing with childhood cancer and another for Down syndrome. There are 48 groups dedicated to digestive system disorders like Crohn’s disease and appendicitis. 23 mental health groups are currently available that include Alzheimer’s, autism, and depression.
If you are in need of encouragement and advice from others that understand explicitly what you are going through, then you should consider joining an online health community this year.
The 25th Annual Alzheimer’s Education Symposium will be held on Tuesday, November 18 at the Denver Marriott Tech Center. It is an invaluable one day event for anyone who has a loved one dealing with memory loss. Sponsored by the Colorado Chapter of the Alzheimer’s Association, local and national speakers as well as panel discussions will focus on strategies for Alzheimer’s, dementia and memory loss. Current research, treatment options and local resources for families will be discussed. There is also a separate Early Stage Forum that coincides during this event for individuals and their care partners dealing with early stage memory loss. Registration is required. Call 303-813-1669 for more details.
Younger-onset Alzheimer’s in Colorado and how companies as well as family members are dealing with this epidemic was highlighted in the Denver Post this week. http://www.denverpost.com/news/ci_26774379/colorado-lives-workplaces-increasingly-robbed-by-alzheimers-disease
A book that has been receiving critical acclaim about Alzheimer’s is called Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s by Meryl Comer. As a TV journalist she considers herself a “prisoner of Alzheimer’s” when her husband, a cancer researcher for the National Institute of Health was diagnosed with younger-onset Alzheimer’s at the age of 58. Watch Meryl Comer in this compelling video describe her personal experience and her current advocacy work to help others not endure what she did. http://www.youtube.com/watch?v=NMjR08OHxVM
University of Colorado Director of Alzheimer’s Disease Program provides a Q&A session on current research successes and failures. Most disturbing discussion point is that if we were to all live to the age of 85, half of us will have Alzheimer’s and the other half will be the caregivers. We will all be affected by this devastating progressive brain disease. Watch the session here: Alzheimer’s Research Update
Caregiving for a family member has become a new job title for many relatives. Currently, 39% of U.S. adults provide care for a loved one. This statistic has increased 9% from 2010. Long-distance caregiving for an elderly parent is common due to families relocating based on a specific career path. Research has found that many caregivers utilize technology to help diagnose and manage their loved one’s health care whether they live in close proximity or far away.
A product that I have found to be helpful in my patient advocacy business for family caregivers is called UP developed by Jawbone. It is a $130 wristband that is used in conjunction with a free Internet app to track your daily sleep, food consumption and mobility. It is very user-friendly and provides data that can help you proactively manage your health. The data obtained will allow you to make informed decisions on current and anticipated care needs.
Since sleep patterns change considerably as we age, especially for individuals living with dementia, it is beneficial to know not only when one falls asleep throughout the day but also how long do they sleep and how frequently do they get up.
It has been stated that 10,000 steps per day for an active person is a healthy goal. But what about an elderly person who has a medical condition that affects his/her mobility? The UP wristband will allow you to track on a daily basis the amount of steps taken. This information can be used to justify increasing therapy and/or revising an exercise plan to maintain or improve results.
Food consumption can be monitored once it has been entered into the application. Depending on the cognition level of the older adult, someone may need to assist during this process or you can choose not to track food intake and calories.
If an in-home caregiver has been hired or an assisted living community is utilized, this is also a good way to monitor their personal care for your loved one.
For more information about UP, visit https://jawbone.com/up.
The 2012 holiday season is upon us. Many family members that you may not see on a regular basis are now in your home for an extended period to celebrate. A loved one may already have a dementia diagnosis which has noticeably progressed since a previous visit. Or, you may witness early warning signs of dementia which have gone undiagnosed. Dementia is a brain disease with the most common cause being Alzheimer’s disease.
November is recognized as National Alzheimer’s Disease Awareness Month. This is an appropriate month for bringing awareness to the disease since many families may initially recognize early symptoms during this holiday season. Symptoms may include: progressive forgetfulness, confusion, language difficulties, errors in judgment, and difficulty doing familiar tasks. Dementia is not part of our normal aging process as some may tell you.
Some dementias can be reversed if caused by depression, vitamin deficiency, thyroid malfunction, or hydrocephalus (water on the brain). The most common reason that you may have an irreversible dementia is if you have Alzheimer’s disease. Approximately 10 million baby boomers will develop what is now being called the defining disease of the baby boomer generation.
Here are some suggestions for coping with dementia during the holiday season.
- Try to maintain the same daily routine as much as possible to reduce stress and anxiety.
- Family holiday traditions are important. However, if a tradition is not practical for someone dealing with dementia, then substitute with a newly, created tradition.
- A holiday dinner may need to become a holiday lunch since many living with dementia perform better earlier in the day.
- Use gift bags instead of wrapping paper. They can participate more easily in the gift wrapping/unwrapping process if bags are used.
- Notify all holiday guests prior to their arrival that a loved one is dealing with dementia. Provide suggestions to guests on how to detect increased anxiety or frustration as well as tips for calming your loved one down.
- Keep rooms well lit and turn off the TV. Make sure music is not too loud.
- Identify yourself when greeting. If name recognition is a problem, make a game out of having everyone wear name tags.
- Ask one question at a time.
- Don’t argue. Be calm and supportive. Speak slowly and clearly.
- Be patient and flexible.
- Simplify your gatherings. Perhaps have several gatherings with fewer guests instead of one large gathering of family and friends.
- Watch for signs of fatigue and provide a safe, quiet area to rest.
- Gifts for the caregiver? Respite care! Offer your time to relieve the care partner from their daily duties. Even better, offer your time to stay a few hours with the individual living with dementia and provide a gift certificate to the care partner to receive a massage or go to a movie.
I wish for all a safe and loving holiday season with your family and friends! Treasure this precious time together.