Where Have All the Flowers Gone. . . Long Time Passing

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This song comes to mind as I scan my past memory café themes, and have flashes of shared moments of joy, of memory and of amazing souls who have transitioned out of life with dementia.

  • Making strawberry jam at Park Station with my blue-eyed wonder Jane
  • Prompting a sweet smile from Gail
  • Receiving a wink from Jim and a laugh
  • Bonding over MD crab memories with Dick
  • Basking in the gentlemanly favor of Archie
  • Enjoying the assistance of David, always willing, always agile
  • Enjoying Tom’s flirtatious interpretations and observations
  • Marveling at Sid’s pleasant and polite insistence
  • Listening intently to David’s stories ripe with detail and joy 
  • Sharing baseball memories and history facts with Bruce

Each of these individuals added color and joy to our memory café family. They were flowers whose blooms were remarkable even late into the winter of dementia. What an honor to have spent time in their glow; realizing that I was basking in the prime of their day.  

Through the generosity of wonderful sponsors, I have been blessed with the task of watering them with the best in Memory Engagement, giving their care partners a chance to relax, as well as recognizing each care partner for their steadfastness.

Arden Courts and Dr. Cate re-ignited Memory Café of Tampa Bay four years ago. Many of our early attendees are no longer with us. Some are living in specialized care; others have passed away. Even as new folks join us, we remember with nostalgia all the sweet moments shared and acknowledge the profound commitment of their spouses and care partners.

Dr. Cate will always be a gardener of dementia world, watering and tending to prompt the blossoms. Now we are doing the gardening via Zoom, but we maintain the prime of day time, the best in Memory Engagement to continue to reap the colorful memories despite the season—all sponsored by premier sponsors.

Where have all the flowers gone? Dementia has picked them everyone. When will the research cure?

Until they do, we garden—carrying water, hoeing weeds and nurturing blooms.  Join us every Mon., Weds., & Fri. 11:00 am at catemccarty.com/calendar.

Dedicated to all the individuals who are no longer with us.

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Of Mice & Men

As we move into a new world with outdoor exercise, masks, and less of our got-to exercises, research is giving us new validation on the value of exercise. Research does not always distinguish a dementia type in a study which allows us to generalize to our lives with dementia. In the case of exercise’s impact on dementia, there really are no down sides whether aerobic and or strength training.

Exercise’s impact on dementia is a continually growing field of research with a recent study looking specifically at Parkinson’s Disease and long-term voluntary exercise.1 This eight week study used mice as the subjects. The control group had no running wheel in their cage, the study group had a running wheel. Findings showed that the mice who voluntarily exercised daily had reduced significant motor deficits. The results showed that voluntary exercise not only reduced motor decline but provided a level of neuroprotection— immediate and longer-term benefits. We could simply sit in our recliner and wait for this study to be validated in humans, or take it as a no-lose reason to exercise, even without our own running wheel😊.

A second mouse study revealed similar outcomes for mice with Alzheimer’s (AD).2 In this study, wild-type mice with AD were housed with intermittent or unlimited access to the running wheel. Regardless of intermittent or continuous access, the exercise resulted in improved brain function (neurogenesis) for both sets of mice.  

As older adults, a high-risk group for COVID-19, our exercise routine may well have been changed or missing. The second study clarifies that, in the case of mice, even intermittent exercise was brain positive. Perhaps you and your care partner go to the mall to walk, that might still be doable with appropriate precautions; or perhaps you switch to walking in your neighborhood or even at home with a digital program for walk or movement.

Now that summer has returned, swimming or water exercise looks like a safe option. According to the CDC “there is no evidence that COVID-19 can spread to people through the water used in pools, hot tubs, or water playgrounds. Proper operation and disinfection of pools, hot tubs and water playgrounds should kill the virus that causes COVID 19.”3

Whatever exercise you choose to do at this time, the CDC cautions people to limit close contact with people outside their homes in public spaces, both in and out of the water. Take a page from the mouse research, add some exercise back into your routine, it will improve your brain and your spirits.

Footnotes

1Wan-Ling, T., Hsin-Yung, C., Ying-Zu, H., Yuan-Hao, C., Chi-Wei, K., et al., 2019. Long-term voluntary physical exercise exerts neuroprotective effects and motor disturbance alleviation in a rat model of Parkinson’s Disease, Behavioral Neurology, doi: 10.1155/2019/4829572. eCollection 2019.

2Ginsberding, A-L., Zampar, S., Stazi, M., Liebetanz, D., & Wirths. O. 2019.

Pysical activity ameliorates impaired hippocampal neurogenesis in the Tg4-42 mouse model of Alzheimer’s Disease, 11:1759091419892692,  doi: 10.1177/1759091419892692.


3https://www.cdc.gov/healthywater/swimming/index.shtml

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Brain Connections via Digital Connection

As the CDC continues to promote that older adults are safer at home, those of us caring for an individual with dementia may be finding our routines are suffering from lack of cognitive and social connections. Research specific to dementia care partners is still sparse, but anecdotally we are hearing care partners expressing sadness, anxiety and depression resulting from isolation.

Those who had routines that included live memory cafes, social gatherings and even adult day attendance are struggling with the prolonged isolation that has resulted from staying at home as protection from COVID-19. Almost three months in, some of us have found outlet in digital connection, others of us have continued to struggle. Meanwhile those of us in the profession are seeing increases in caregiver stress, dementia behaviors and overall cognitive decline. Where to turn?

Digital connections continue to prove very positive for caregivers of older adults in general.1 In a study reviewing digital mental health tools, three categories were found to be most available:

  • Building skills
  • Educating caregivers
  • Assisting with caregiving duties

All three proved to be positive for overall caregiver health, but the majority were focused on younger caregivers. Resources for older caregivers and those caring for an individual with dementia were less numerous, but contributed to a reduction in caregiver burden and an increase in dementia education.

Both the Alzheimer’s Association and Arden Courts have been forerunners in adapting dementia caregiver support and education since COVID-19 precautions began. From dementia training, to educational webinars, support groups and even memory cafes—there are digital options for you to boost your safer at home routine. For those who are caring at home for a loved one, virtual memory cafes are a great way to connect socially with others on the journey as well as engage in creative and engaging projects together. These range from songfests to education to reminiscence.

Research looking at digital reminiscence apps revealed some interesting results. It was found that care partners were more likely to reminisce after generic music and photos than they were after personal music and photos.2 Meanwhile care partners were more likely to reminisce later in the day than earlier. As in all research, there is much more to be investigated, but it confirms the value of digital reminiscence and generic music and photos.

If you are struggling with digital technology, consider asking a younger family member or friend to coach you through the steps. Younger generations have had much more exposure to digital technology and can be helpful tutors.

Tablets, smart television and digital connections are proving to be our best defense against brain stagnation and social isolation. For enticing digital programs and support access the Alzheimer’s Association at alz.org or arden-courts.com. 

Footnotes

1Petrovic, M. & Gaggioli, A. 2020. Digital mental health tools for caregivers of older adults-a scoping review, Frontiers of Public Health, 28; 8:128.

2 Potts, C., Bond, R., Assumpta, R., Mulvenna, M., McCauley, C. et al. 2020. Evaluating the use of Ecological Momentary Assessment within a digital health intervention for reminiscence: How do people living with dementia and their carers engage? Journal of Internet Medical Research Mhealth Uhealth, May 14, doi: 10.2196/17120. Online ahead of print.

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Dementia Comfort & COVID-19

As a dementia care partner, the global pandemic has created a new set of concerns and stressors.  Referencing the latest research may help guide you as you navigate the new care landscape. Alzheimer’s Disease International1has offered clear and concise guidance on day-to-day approaches in this graphic:

These practical tips are helpful, and yet as we continue to practice Safer-at-Home, care partners may be finding their mental health at risk. ADI suggests that we need not only physical protection but also mental and psychosocial. In an overview of China’s efforts in addressing COVID-19’s impact on dementia care, the need for psychological first aid is stated2. Being the first nation to get to a zero rate of new cases, their efforts in dementia care are noteworthy for those of us still in rising numbers.

Although COVID-19 is not necessarily impacting people with dementia cognitively, if testing negative, it’s impact emotionally and behaviorally is significant. The disruption of routine, the increased media focus are impacting both care partners’ psychological health3. Care partners are reporting sleep disruption and increased anxiety. The Chinese research found that persons with dementia often have an irrational analysis of the epidemic. Anecdotally, caregivers report that they have used the media to try to convince their loved one of a more rational analysis. This strategy is not working. Researchers strongly advise limiting media feedback as one step in managing irrational behaviors and responses. 

Key strategies promoted in research include accessing additional mental and psychosocial mental health from dementia care professionals, mental health resources and community volunteers.2 This can be done via internet or telephone.  Whether consulting your insurer, your local Alzheimer’s Association, ADI or numerous on-line webinars and virtual groups—this is the time to increase time spent on mental health. Consider calling your doctor or memory disorders clinic and asking for telehealth options. Accessing family or professional help to have respite might be a consideration as long as COVID-19 screening precautions are taken.

In-home resources suggested to mitigate anxiety include relaxation and mindfulness instruction. Dr. Wang listed partaking of free online courses in subjects like music, arts, cooking as positive interventions to help dementia care partners enhance their daily routine while isolated.2

The second stream of current COVID-19 research relates to our nutritional approach. Published in Brain Behavior and Immunity, Western Diet and its high fat, high sugar components is discussed because obesity has been shown to be a risk factor. The promising news is that consuming healthy foods has a rapid anti-inflammatory effect, even in the presence of obesity pathology.The researchers suggest that we “refrain from eating foods high in saturated fats and sugar and instead consume high amounts of fiber, whole grains, unsaturated fats, and antioxidants to boost our immune function.”4

For many of us the need for emotional and psychosocial support during this time of isolation is supplanted with an increase in fats and sugar. Perhaps it would work best to access increasing our mental health support first, and then shifting our dietary focus.

The bottom line for dementia caregivers in the age of COVID-19 is that our emotional health is as vital as our physical health. Get online, pick up your phone, access support.

Footnotes

1Alzheimer’s Disease International ADI offers advice and support during COVID-19. March 17, 2020. https://www.alz.co.uk/news/adi-offers-advice-and-support-during-covid-19

2Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., et al., 2020. Dementia Care During Covid, Lancet, 395(10231): 1190-1191.

3https://www.alz.co.uk/news/covid-19-sharing-experience-and-advice-from-adis-member-association-in-china 

4 Butler, M. J.& Barrietos, R. M. 2020. The impact of nutrition on COVID-19 susceptibility and long-term consequences, Brain Behavior & Immunity, April 18, doi: 10.1016/j.bbi.2020.04.040 [Epub ahead of print].

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Seeking Support while Safe at Home

As dementia caregivers, many of us had some external support systems in place before the Safer at Home mandate. With support groups, memory cafes, senior centers and adult day centers closed, we are struggling to find replacements. Adapting to a new in-home routine has its challenges. Limited outdoor spaces for exercise, and increased isolation has added a new dimension to our dementia caregiving. Many are adapting to technology in order to seek support and guidance.

But how effective is internet-based interventions?

Research looking at psychological interventions for dementia caregivers identified four types of caregiver intervention:

  • Psychoeducational
  • Counseling and psychotherapy
  • Multicomponent programs
  • Mindfulness-based interventions

In all four types, researchers concluded that they were efficient and effective when aided by technology-adaptation for delivery.1 This is validation that even in a pandemic, we as caregivers can access effective tools to manage the tough changes dementia brings.

Research looking at delivery method found that internet-based interventions were effective in addressing family caregiver well-being, in particular depression, anxiety, and burden.2 Online psychological interventions showed improvements in caregiver mental health. This was particularly so when it was tailored to the individual and used in a multicomponent intervention. Online peer support was appreciated by participants and had positive effects on stress.

In fact, a metanalysis of internet-based interventions’ effectiveness in overall chronic care showed positive outcomes in caregiver depression, stress, distress and anxiety.3 These positive effects were particularly evident in interventions with information and education (with or without professional psychological support) with a lesser impact from peer and psychological support.

Once again education and seeking help shine as primary aids to our resilience as effective care partners.

As we dealing with a limited daily routine, a good strategy would be to include technology as a mainstay for navigating our stress, seeking support and staying informed. Include virtual support groups, virtual memory cafes, and educational webinars as keystones of your week, for both your loved one’s mental health and your own.

Footnotes  

1Spenser, L., Potterton, R., Allen, K., Musiat, P., & Schmidt, U. (2019). Internet-based interventions for carers of individuals with psychiatric disorders, neurological disorders, or brain injuries: Systematic review, Jul 9;21(7): e10876, doi: 10.2196/10876.

2Sherifali, D., Ali, M.U., Ploeg, J, Markle-Reid, M., Valaitis, R., et al., (2018). Impact of internet-based interventions on caregiver mental health: Systematic review and meta-analysis, Journal of Medical Internet Research, 20(7): e10668. Published online 2018 Jul 3. doi: 10.2196/10668.

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Enduring the Pause

This season is one of a lot of symbolism in the Judeo-Christian culture. Whether it is saving an empty chair at the Passover Seder for Elijah or the wait between Good Friday and Easter Sunday—there is a pause.

As a world we are experiencing a pause, with vague hopes of what will return, trepidation of what will be different. Being in the present is confounded by our internal fears, our impatience and our discomfort with change.

As dementia care partners we too have many pauses, whether they are valleys of decline or plateaus of stability—the difficulty lies in staying focused in the present. 
Flamboyant, Castilla, Ponce
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Connecting Through Technology

Social distancing does not have to feel like a jail sentence. But when you are feeling socially isolated and caring for a loved one with dementia, it can certainly feel like it.

How can we navigate the changes in both our lives and theirs? Perhaps your loved one enjoyed attending a group, a center, eating out or going to the gym with you. Perhaps you were able to flee the house for a few hours and do self-care things.  Now as we navigate COVID-19, we are called to adapt. Technology can be an asset.

If you are intimidated by technology, now is the time to use the good old-fashioned phone and call a friend, a neighbor, a son or daughter and ask for help. Not only will you gain from the connection to your helper, you will be challenging your brain to learn some new and useful tools.  

Did you know that every day since Coronavirus has spread, resources for connecting have increased? From the singing Italians who sang to one another from open windows during the first days of isolation, adaptation and creativity have been highlighted. Children’s book authors offering free YouTube drawing lessons, virtual tours, free concerts, carry-out and delivery from your favorite restaurants, are some of just a few resources that have blossomed.

Whether you have a tablet, a home computer, a smart phone, even a regular phone—there are ways to connect that will help brighten your days despite the new guidelines for isolation.

There is a short list of resource locations on this site’s landing page that might make days with your loved one a bit more pleasant. 

If your local support group or memory café is no longer meeting, join Dr. Cate on Zoom. At catemccarty.com you can join weekly support groups and a variety of memory cafes that include reminiscence, exercise and camaraderie. 

Many of your local professionals are offering virtual options. Support is a connection away. Do not let technology keep you away. Reach out to learn how to use it. Social distance technology might bring you closer than you have ever been before. 

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Springtime Light

As Spring gets closer, we see changes in light. Whether it is Daylight Savings Time and springing forward or a subtle change in trees budding—our world is moving toward more light. As our care partner’s brain changes, we must change to give care. That change can bring up feelings of resentment, anger, guilt, shame, loneliness and depression. Even as the natural world gets brighter, our path may feel full of shadows.

Spring light holds a lesson for caregivers.  A gardening resource explains that light comes in colors.1 In Spring, red light provides the energizing chlorophyll to make a plant green. From a red light comes growth.

This is true for plants, and is true for growth in dementia world. Change for your loved one has to start with a red light for you.

  • A red light to ignoring signs of brain change
  • A red light to neglecting self-care
  • A red light to putting the needs of your loved one before your own

We are the change agents. Our loved ones have a disease that makes change difficult or impossible. Like plants in Spring, we need to use the red light as a filter for our change.

Research shows that caregivers are resilient and have a higher sense of well-being with education, with seeking help and with spirituality.2

  • Go to educational events, read educational books
  • Ask for help either home care or placement
  • Discover what gives you inner peace and get daily doses

Our loved one is experiencing brain change that is altering their ability to process what they once could. You have become the light of their life—which requires you to seek self-care, knowledge and grace in order to thrive.

Footnotes

1http://www.cannagardening.com/influence_of_colors

2Bull M. J. (2014). Strategies for sustaining self used by family caregivers for older adults with dementia. Journal of holistic nursing : official journal of the American Holistic Nurses’ Association32(2), 127–135. https://doi.org/10.1177/0898010113509724

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Sweetheart Messages

In the season of conversation hearts, a candy that has long represented Valentine’s day, how can we express our love to individuals who are changing as quickly as their brain changes with dementia?

Dr. Gary Chapman’s Five Love Languages describes how individuals have a primary and secondary love language.1 The five love languages are:

  • Words of Affirmation
  • Quality Time
  • Receiving Gifts
  • Acts of Service
  • Physical Touch

As a caregiver you may be able to define your loved one’s primary love language by reflecting on the way they have expressed love in the past.

  • Did your mom give gifts more often than share words of affirmation?
  • Did your husband do more acts of service than schedule quality time?

Dementia changes may cloud all communication and as the changes confuse the individual, often complaints become the communication style. What they complain about most, may be their primary love language.

Words of affirmation and touch are my choice as the top two love languages for later stages of dementia. That being said, our words of affirmation and our touch have to change to match the brain change.

In my Creating a Thriving Environment2 training, one of the five care strategies I teach is Simplify.  We can simplify our message and approach to better communicate with our loved one whose brain is changing. So, the romantic limerick that once you rattled off to your husband who now understands approximately one out of every four words, needs to be shorter.

Think conversation hearts.

The essence of love, with a few short words.  You may or may not like the candy, but a sprinkling of the sentiments throughout your day would surely ease some insecurity.  The same is true for your loved one.

In my home I love you has become the connecting words my husband uses to affirm that I am present in his world, our home.  He shouts it from the other room, as a connection. My response for now, at this juncture, is I love you more. The connection is confirmed, I am in the house.  The same way he whips his head around when I switch sides as we walk together—a “where are you—oh there you are.”

Perhaps your mom, dad, friend is having word retrieval issues, a simple statement; I am listening stated with eye contact and patience communicates love.  Or I am here with a touch.

There are many changes as the brain shrinks quicker than normal aging.  As caregivers we are called to “distinguish between love as a feeling and love as an action.5 In my experience, the action can produce the feeling which makes the job of caregiving just a  little less overwhelming.

Footnotes

1Chapman, G. 2010. The Five Love Languages, Northfield Publishing.

2https://catemccarty.com/cate-list/

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Romancing Dementia

Living with dementia results in a lot of changes, particularly in terms of touch. Whether you are a wife, husband, daughter or friend—it becomes difficult to know how best to respond. The use of touch can be very effective.

The Functional Assessment Staging Tool is a tool widely used to assess where individuals are in the seven stages of dementia progression.2 This well validated tool shows that as a person’s brain degenerates, they move back in time to younger ages of emotional and cognitive processing. Concepts, skills and emotional connections that were normal as an adult start regressing into adolescent and eventually childhood responses.

This makes relationships with caregivers, whether professional, child or spouse, challenging. We need to adapt.

Cultural anthropologist Ashley Montagu links childhood develop and touch in his book Touching, the Human Significance of the Skin. If you have any spare time, this book has fascinating information. He describes the skin as the second most powerful organ for interpreting signals and communication—with the brain being the most powerful. Montagu clarifies that even as the skin changes with age, the fingers and hands have the greatest number of neuro-tactile elements.

As a spousal caregiver, I see the subtle changes in my husband. The romantic embrace is now more of a bear hug. I have adapted with more hand-holding, less expectation of romance and an increase in camaraderie through touch. The we are in this together needs to be expressed now more than ever, but the old strategies were no longer working.

I coach grieving adult children who are totally frustrated when they reach out to a parent with dementia to share an anecdote or reach out for comfort. The responses that were once there, are no longer. I coach caregivers to expand their network.

Who might offer the wisdom and solace that mom, dad or spouse once did?  Adaptation is the only way to thrive in this disease.

This journey is not easy, and certainly not one any of us would have chosen. But we do have many resources to help us along the path—provided we practice self-love and stay in touch with one another.

References

Chapman, G. 2010. The Five Love Languages, Northfield Publishing.

Montagu, A. 1986. Touching, the Human Significance of the Skin, Harper & Row.

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