Conflict in the Family – Will Mediation Help You?

This month’s dementia care article is guest-authored by our colleague Karen Dworski, LCSW. Thank you Karen for sharing your insights, and by supporting our shared communities. 

Mediation for Families Facing Dementia

by Karen Dworski, L.C.S.W., ElderPath Consultant and Mediator

Few people are prepared to hear that their mother, father, brother, or sister has been diagnosed with a dementia (now called a Neurocognitive Disorder). Just like the grief process described by Dr. Elizabeth Kubler-Ross in her work on the five stages of grief, family members of a loved one with a Neurocognitive Disorder go through a similar grieving process: denial, anger, guilt,sadness and acceptance.* Often families struggle with the denial stage, such as when a family member, say a daughter in California, is in contact with her Connecticut sister who is managing care for their mother who has been diagnosed with Alzheimer’s disease. So often I hear that the California daughter says, “Mom’s fine! I talk with her every week and she makes sense, she knows who I am.”  Or a son who is not a caregiver may struggle with his mother’s decision to place his dad in a memory care assisted living, struggling with his own guilt about not being available to give enough support to keep his dad home.

These are two of many scenarios that occur when family mediation can be very helpful in assisting families with the emotions and decisions related to caring for a loved one with a Neurocognitive Disorder (dementia). Often families benefit from sitting down with a dementia care specialist who can facilitate a discussion about care, covering such issues as:

  • what is each family member’s goal for care for that loved one with a Neurocognitive Disorder?

  • What is a realistic assessment of the loved one’s level of dementia and stage of the disease?

  • How to help a family understand the level of functioning and explore the options, develop different plans of care that meet the needs of the loved ones in a way that basically satisfies the family- finding the right path for elder care.

  • How to have this discussion and bring family to the same page, preserving family connections and relationships

As a social worker and therapist specializing in geriatrics and Neurocognitive Disorders, I meet with families in their homes or my office to mediate these issues.Often families are surprised to find out about the many good options for care that are available, from in- home care that ranges from a few hours to 24/7 care, supplemented by adult day recreation programs, to excellent memory care assisted living communities and nursing homes. An important part of the mediation is to address the grief, loss, and sometimes denial that family members experience, bringing them to an accordance around a plan of care. Of course, the discussion also includes reviewing funding for care, and referrals to funding sources where possible.

I recently met with a daughter, Jessica, from Massachusetts and her father’s partner of over 20 years, Doreen. Doreen had been providing care for Jessica’s father for the last 3 years and his father’s Neurocognitive Disorder was advancing rapidly, leaving him currently with the developmental abilities of a 5 year old child, needing help with many functions of daily life: medication management, dressing, bathing, meal preparation, and recently toileting assistance. Doreen was burned out from working full time and providing all the care except for a 2 hour a day caregiver 5 days a week. Jessica’s father was home alone except for 2 hours a day with a caregiver, so he was often bored and began to feel more depressed. We identified Jessica’s wish that Doreen could continue to care for her father, yet she understood Doreen’s exhaustion and the need to stop caregiving and return to being a companion/partner. We talked about the way Doreen’s role over the last 3 years slipped into one that was primarily caregiving instead of a life partner, and how stressful and lonely that was for Doreen. During the 2 hour mediation session, Jessica and Doreen agreed on a plan for in-home 24/7 care with Doreen moving  out over several weeks, but continuing to visit a few nights a week after work in the role of companion/partner. They were aware of the option of moving Jessica’s father to a memory care community and ultimately to a nursing home with a dementia care specialty, but that wasn’t the first choice.

With the aid of mediation, both Jessica and Doreen were able to develop a plan where everyone’s basic needs were met: Jessica’s needed to know that Doreen would continue to be a part of her father’s life and that her father would have the care and support he needed.  Doreen sorely needed a respite from caregiving and to be able to return to her role as companion/partner. Jessica’s father would have high quality paid caregivers who would provide the stimulation and activity needed to keep him from becoming depressed and would keep his functioning as high as possible over time. Both Doreen and Jessica agreed on the steps needed to put in home care and remove Doreen from direct caregiving. Ultimately, they agreed on a good plan for Jessica’s father and, importantly,  their relationship with each other was preserved, one of the goals of good mediation. As you can see, family mediation can provide the right help at the right time.

*See Grief and Loss as Alzheimer’s Progresses:https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

Karen Dworski, L.C.S.W. is a Consultant and Mediator for ElderPath LLC; www.elderpath.net860-652-8809; karen.dworski@elderpath.net

Thank you Karen for submitting this. And thank you all for reading our blog. For more information about stages of dementia, services which may help you or how to schedule a dementia consultation, call Hebrew HealthCare at 860-920-1810. ~Pam

Words, Image and Ideas: Pathways through Dementia

Pamela Atwood, MA, CDP, DCCP, CLL, Director of Dementia Care, Hebrew Health Care

CAN PEOPLE WITH ADVANCED DEMENTIA READ? Ask clients about their previous interests and older adults answer “Well, I used to like to read.” Has this favorite hobby been lost along with their memory of what they had for breakfast? Hebrew Health Care loves evidence-based practical activities for people with dementia and their families – we HAD to share this resource with you, so we’ve invited Susan Ostrowski to guest-author an article for you. Email us your feedback at http://www.agingcareacademy.org.

Memory-challenged adults may not speak well or comprehend language easily; maybe they can’t manage their hygiene independently. It is easy to assume that their ability to read has atrophied as well.

If we put a large print single word in front of a memory-challenged adult, and she can see it, there’s an excellent chance that she can read it, i.e., sound out the word and comprehend it. If we put a phrase or a sentence or even a small paragraph, printed in big, black letters, on a bright white piece of paper – would she read it? Most likely, yes.

For most memory-challenged adults with functional vision and functional language, reading is an intact, preserved skill. Then why are conventional newspapers, magazines and books so difficult for adults with dementia to process?

The answer lies in the format of typical published reading material.

Typical published material consists of condensed small print, low visual contrast and extraneous visual stimuli. These are major impediments to reading for seniors with dementia. However, if we present written language with large, bold font on white paper with wide margins and extra space between the sentences, they can usually read it.

To increase the readability of a text for this group of seniors, the following elements must be present:
-minimal visual distractions (which compensates for attention deficits),
-sharp visual contrast (decreases eye strain),
-spacious lines of print (compensates for visual tracking difficulties),
-short, direct syntax (lessens the burden on working memory),
-contextual photographs (prompts and maintains interest).

And here’s the exciting part: these lifelong readers generally do not require diluted vocabulary or juvenile subject matter. When presented with child-like material, they show little motivation to read. They can process sophisticated words and subject matter that are reflective of their spoken language. Generally it is only the presentation of the reading material that has to be modified.

Cyber Monday Gift Ideas for Seniors

by Pamela Atwood, MA, CDP, CLL

Happy Thanksgiving. In case you haven’t noticed ~ the holidays have started. Negative political ads have been replaced by holiday “needs” in a nearly-constant bombardment of commercials, while Facebook-ers debated whether or not to shop on Thanksgiving. I think shopping for me would be much more pleasurable if I had a good sense of what each person on my list really wanted. As I was thinking last Friday of the “deals” I was surely missing as work trumped Black Friday, it struck me that you might like a list of ideas for those on your list who are elderly or living in Assisted Living or Nursing Homes. For a complete list of ideas and resources, visit www.agingcareacademy.org and scroll down to “Your Personal Consultant.”

Hobby & Leisure – there are great resources available for everything from adapted puzzles to games and reading. The puzzles should always be age-appropriate (not childlike), and suitable for the current ability – from 4 or 6 pieces to 50 pieces. Magnetic puzzles with stands are great for those with neck problems. For reading, my newest resource is based in solid research from a physician and speech/language pathologist: Reading2Connect.com. This product has adapted graphics and photos, plus reading content tailored to various abilities — people with advanced dementia may still be able to read! Games which spark memories, use contrast and easy to manipulate materials are available at alzstore.com, best-alzheimers-products.com and memoryjoggingpuzzles.com.

Cognitive Fitness – books, activity cards, games and software are available in all shapes and sizes. Attainmentcompany.com offers the Whole Brain Workout series. Resources throughout the web offer products such as “Connect: Memory Enhancing Game” which can be used in a number of ways to improve neuronal flexibility for all abilities.

Physical Fitness – being confined to a wheel chair does not mean you should quit being active. Some of the best exercise videos are now available at very little cost. Enjoying yoga, aerobics and stretching and strengthening is now possible in your own living room or day room. Check out chairdancing.com, gentlefitness.com and the award winning PBS special sitandbefit.org.

Quality of Life – No one should have to watch garbage television, wonder where the family is or be isolated because of changes in communication. A communication book, talking photo album or alternative TV program would improve quality of life for all. Attainmentcompany.com, Alzstore.com and Best-Alzheimers-Products.com can provide ideas for any gift giving budget.

If you order through Amazon, sign up for AmazonSmile and add Hebrew Health Care as your charity: a % of your total will be donated so your gift is twice as nice.  Thank you, and Happy Holidays!

 

Waiting in the Green Room

Pamela Atwood, MA, CDP, DCCP, CLL, Director of Dementia Care, Hebrew Health Care

As I sit here in the Green Room at Fox Channel 61, I am aware of how little we think about brain health. People take it for granted.

Sitting across from me is a young man dressed in his AAA shirt. He watches the news on the TV. Maybe he is trying to remember the answers to his pre-created questions. Or maybe this is old hat to him; he is recalling his experience during Hurricane Irene, which the newscasters remind us was 3 years ago.

Next to him are two women from the local children’s museum. No one but me notices they have small animal cages at their feet, protective towels covering the “guests” who will appear before me (a hedgehog and a snake). They discuss the details of their lives. Kids’ schedules, first days of school, other work projects. Their attention goes to the Green Room TV over a story of famous faces drawn into lattes, unaware if their cognitive functions deciphering the espresso art.

Next to me sits a grandmother and her teenage grandson. He created YouTube videos when they were driving around after school – fun things like his “friend” Miley Cyrus who broke her leg while working, but is doing much better, or a story that he got a girl pregnant, which his grandmother knows is his way of teasing her to get a reaction (she’s unaware that Miley is a celebrity). She takes none of his nonsense. The videos have gone viral. They are excited to see the story teaser on TV. I tell him how lucky he is to have his grandma and get their autographs to their delight. When they ask what I do, they give me the response everyone does… “Oh”.

It’s something people take for granted, cognitive wellness. Whether it’s remembering driving tips for the busiest weekend of the year, or executive functions for organizing your day, or learning about YouTube and being creative with the special relationship we can have with our elders. And people are speechless at the thought of losing it. They do not realize there are things we can do to MINIMIZE those risks.

There are so many people to reach with this message, and so many competing messages grabbing their attention. Please visit www.agingcareacademy.org and click on the Dementia Risk Screen. Don’t let your answer be “Oh” when faced with the concept of losing cognitive health. Empower yourself to do all that you can – challenge your brain to remember simple lists, reminisce about facts of our past history, create projects and think about the individual steps, look for familiarity in places you’d least expect it, tell creative stories, learn about new things and keep social ties strong, especially relationships with those you love. All of these things help keep your brain healthy.

Exciting Alzheimer’s Research Updates

Pamela Atwood, MA, CDP, CLL, DCC-T, Director of Dementia Care Services, Hebrew Health Care

Rates of Dementia Decreasing with Simple Steps

The news from the Alzheimer’s Association International Conference in Copenhagen last week was encouraging. Rates of Americans getting dementia are decreasing, as are rates in other “rich” countries. Why? We are controlling our risk factors.

Last year, Hebrew Health Care published the Dementia Risk Screen: eight of the 11 risk factors are modifiable. The news this week confirms you can minimize your risks!

Research conducted at Boston University has analyzed rates of dementia through several decades. The Framingham Study indicates that an individual’s risk of getting dementia is 44% lower than it was, and that the average age of onset is now 85, compared to 80 in the 1970s.

The primary reason: improved health overall. Smoking rates have dropped. Heart disease rates are improving. Numbers of strokes have declined. The study indicates the following steps will continue to improve the numbers:
o Stop smoking
o Control blood pressure
o Manage weight
o Keep cholesterol levels within normal limits
o Exercise

In other countries, the numbers are improving as well. However, there are new health rates which may limit the excitement. Higher obesity and diabetes rates may further increase the risks of dementia. Quoted in an article by MSN News, Dallas Anderson, Chief of Epidemiology at the US National Institutes of Health said, “It may be what we have now is a sweet-spot (as people with these health issues are still young). They’re not in the dementia range yet, but what is going to happen (with them) in the pipeline?”

Take the Dementia Risk Screen at www.agingcareacademy.org. Listen to the podcasts to learn what you can do to minimize your risks starting today.

New Ways to Diagnose AD Being Developed

Three other breakthroughs were announced this week: a smell test, a blood test and an eye test.

Blood test – Kings College in London reported research conducted over the past decade to develop a test for diagnosis of AD. The studies indicate 87% accuracy. The test detects 10 proteins in the blood, and indicates onset of AD in the following 12 months.
“Why would I want to know?” responded one of my colleagues. “I think most people would NOT want to know,” said a caregiver when we discussed it at a support group meeting.

Most of these tests are being developed FOR research. Many researchers are concerned that drug targets fail because by the time the experimental agents are tried, the disease has taken too much of the brain to be effective.

The target for the blood test is people with mild cognitive impairment (MCI), the vast majority of who develop Alzheimer’s in 5 years following diagnosis.

Although this is exciting, there is no blood test for dementia ‘around the corner’, according to published reports. These are small studies. And with more than 10% of people being misdiagnosed, more work, on larger scale studies, is needed.

The other two tests – smell test and eye test – are correlation studies. At the AAIC press briefing, there were lots of discussions about these two studies. The smell test is about people who have MCI, they experience changes in their ability to smell, and that correlates with the transition to Alzheimer’s. For the eye test, proteins detected correlate with amyloid proteins in the brain. However, there are still a significant number of researchers and experts who question the amyloid THEORY as the protein responsible for plaques and tangles. These tests are based on theories of what causes Alzheimer’s. Also it is important to note that just because you have a change in your sense of smell does NOT mean you have AD. Many conditions affect taste and smell.

New Protein Identified in Alzheimer’s Plaque

There were hundreds of studies shared at AAIC. Another interesting one hails from Mayo Clinic in MN. Researchers have identified a new protein which may be another piece of the “plaque” puzzle. The research compared people who died with Alzheimer’s – some who had symptoms, and some had not. Of the 372 people, more than 200 had this new protein, in addition to amyloid protein. One theory is that perhaps the protein is a byproduct of the disease. The protein has been identified as critical in ALS/Lou Gehrig’s disease and other neurological conditions. More tests will be conducted.

There is still no known CAUSE of Alzheimer’s. Unfortunately, there is still no known cure. However, the research reported at the AAIC last week is encouraging for the ongoing efforts to find the answers which plague us.

Men’s Health and Dementia: Five Healthy Behaviors Which May Lead to a Dementia-Free Retirement

Compiled by Pamela Atwood, MA, CDP, CLL, Director of Dementia Care Services, Hebrew Health Care

A Welsh research team followed more than 2,200 men ages 45 and 59 for 35 years. They had two key objectives: 1) to see if there really is a relationship between healthy lifestyle, chronic disease and cognitive decline; and 2) to see how much impact changes in health activities (adopting new healthy habits) had on wellness over time. The researchers from Cardiff University were tracking health habits and monitoring for chronic conditions including dementia, cardiovascular disease, diabetes and stroke and have authored more than 400 articles in various publications since the end of last year.

So what are the healthiest habits for the men who participated in the study? They probably won’t surprise you.
♥ Exercise regularly.
♥ Don’t smoke.
♥ Maintain a low body weight.
♥ Eat a healthy diet.
♥ Keep alcohol intake low.

While the study found that few people live a fully healthy lifestyle (only 1%), they did see note some interesting findings:

How healthy do you need to be? When should you start?
The study shows that people who consistently followed 4 of the 5 habits reduced their risk of dementia by SIXTY PERCENT (60%). That is very significant. They also reduced their other chronic diseases by 70% (diabetes, heart disease, etc.). Also, start now with JUST ONE NEW HABIT. Researchers found that if the men had been urged to follow just one new healthy habit at the start of the study, the rates of dementia and other diseases would have continued to drop significantly.

What about women?
Although the study participants in this research were all men, there is no reason to think that the results would not be equally impressive for women. We have always said that what is good for the heart is good for the head. There are many research studies on smaller scales which yielded similar findings. And the results of the Welch study are often extrapolated to “people,” not just men.

 

Scan our code and take our dementia risk screen for free, or visit www.agingcareacademy.org right now to learn more about memory issues or to find support for family or a friend with cognitive problems

Scan our code and take our dementia risk screen for free, or visit http://www.agingcareacademy.org right now to learn more about memory issues or to find support for family or a friend with cognitive problems

 

Top 10 Summertime Hazards to Consider in Dementia Care

By Pamela Atwood, MA, CDP, CLL, Director of Dementia Care Services, Hebrew Health Care

1. Keep your car doors locked. A confused person climbing into your car on a hot/humid day presents more risk than wandering in a snowstorm.

2. Avoid too much sun. People with dementia may not be able to express pain or discomfort. Limit how much time they spend outside in the heat or sitting in direct sun. Also remember sunscreen, a hat, sunglasses, and light clothing.

3. Ensure adequate hydration. Older adults often limit fluids to avoid multiple trips to the bathroom at night. Push fluids especially in the summer. Provide non-alcoholic beer and other drinks.

4. Keep an eye on pets. Anticipate that people with progressive dementia will have a harder time keeping pets healthy. Remember our furry friends need cool air and water too.

5. Watch out for slippery floors. As kids come in from the pool, wet suits may create a slip-hazard; falls are catastrophic for people with dementia who may not relearn to walk after a fracture.

6. Time for driving retirement? Many people are reluctant to drive in winter weather. With the summer, they may be returning (unsafely) to the road. Knowing how to operate a vehicle does NOT equate safe driving. Call us at 860-920-1810 for information on how to have these difficult conversations.

7. Think of gun safety. As the long winter leaves us, more people are going outside and enjoying their favorite hobbies. Guns and Alzheimer’s are a dangerous combination – 40% of Veterans with mild dementia have loaded guns in their homes according to the VA. Disable guns, remove them or at least secure the ammo.

8. Medication mix-ups. If you utilize professional help, summer vacations often mean replacement staff. Avoid problems with medications, and other care needs, by keeping clear, easily read, and up-to-date lists of medications, allergies, and routines.

9. Getting lost. We all enjoy a nice walk on a cool summer night. Ensure safety by investigating alert programs or GPS devices – call us at 860-920-1810 for our recommendations. If going on outings or to a game, have a buddy so no one walks around alone.

10. Avoid overstimulation. This time of year is when we all love family picnics, parties, BBQs or just going to a park. Too much noise, too many people, too much to think about can increase restlessness and anxiety in people with dementia. Visit www.agingcareacademy.org for caregiver tips and suggestions.