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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Hindsight & 2020

As we enter 2020, a year that came faster than most of us imagined possible, we can use it as a year to focus on perspective. As caregivers of loved ones with dementia, focus and perspective are often warring elements.  We focus on the changes we are witnessing and often lose sight of the bigger picture. Or get so focused on the long-range that we miss what is right in front of us.

When we revert to hind sight we may be able to reflect on early signs that our loved one’s brain was changing.  Perhaps it was an increased reliance on your assistance with short-term memory. Or maybe it was social inappropriateness. . . when you suddenly felt the awkward silence after a less than tactful statement. 

Research shows that disinhibition, inappropriate affect (facial expression) and lack of empathy are often the first clinical signs of neurodegenerative disease especially in Alzheimer’s disease and behavioral variant Frontotemporal Dementia (FTD).1 These clinical signs are apparent years before noticeable impairment on classical neuropsychological assessment and brain atrophy on imaging. Researchers describe lack of self-control, inability to recognize sarcasm and facial expressions—things we may remember well in hindsight.

Thus, began our own caregiver journey, with angst over social settings; with over-planning, over-compensating and reduced socialization. Caregiver burden and distress is heightened in behavioral variant FTD and Creutzfeldt-Jacob disease.2

How do we deal with caregiver burden and distress? Our ability to cope requires us to step back and rest our eyes. Perspective is gained through:

  • Support groups
  • Respite through in-home care; adult day care
  • Education from skilled dementia trainers
  • Relieve from doctors who understand dementia and focus on the unique symptoms of your loved one

There will come a time when our ability to focus and our perspective is clouded by distress.  At those times we may need more than in-home respite.  As we walk this journey, an alternate route should include a memory care community that specializes and understands the different hues and stages of dementia. Both you and your loved one are individuals dealing with your own individual set of changes and challenges.  Keep your eyes trained for those offering unique solutions and supports in the year of 2020.

Footnotes

1Desmarais, P., Lanctot, K. L., Masellis, M., Black, S. E., & Herrmann, N. (2018). Social inappropriateness in neurodegenerative disorders, International Psychogeriatrics, 30(2): 197-207.

2Uflacker, A., Edmondson, M. C., Onyike, C.U., & Appleby, B. S. (2016). Caregiver burden in atypical dementias: Comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer’s disease, International Psychogeriatrics, 28(2): 269-273.

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Not a Creature was Stirring

Not a Creature Was Stirring

“Not a creature was stirring, not even a mouse . . . 1

As we settle into winter, exercise has become more of a challenge not only because of holiday activities and savory treats but also the shortened days and colder weather. Meanwhile our bodies struggle to adapt to all the extra food, the reduction in sunlight and endorphins.  But research is offering a solution: treadmill exercise.

A Japanese study looking at the effect of treadmill exercise on cognitive decline and white matter found that mice who used the treadmill for six weeks had decreased cognitive decline and increased white matter compared to the mice who were sedentary.2

If you are dealing with behavioral disturbances related to an Alzheimer’s diagnosis, consider the research findings on physical exercise mitigating behavioral impairments.3 Also a mouse study, this study looked at the role of voluntary physical activity with a level of endurance in lessening behaviors. Mice who did the voluntary physical activity had a decrease in behaviors. Could it be that walking while watching a favorite movie or listening to a preferred playlist provide the endurance for the treadmill? Although the research has started with mice, let’s not hold off on reaping the benefits.

Human subject research looking at exercise’s impact on our brains, shows equally encouraging results for individuals diagnosed with Mild Cognitive Impairment.4 This study looked at the combined impact of physical and cognitive exercise. Weekly 90-minute sessions for 40 weeks showed the group receiving combined cognitive and physical exercise improved or maintained their cognitive status compared to the control group that received a 90-minute health promotion class.

As we settle into our winter routines, let’s avoid playing the role of mouse in The Night Before Christmas but instead be modern mice—mice committed to improving our brains by walking, using the treadmill and strengthening cognition with audio books, podcasts, or favorite movies.

Footnotes

1Moore, C.C., The Random House Book of Poetry for Children (Random House Inc., 1983.

2 Ohtomo, R., Kinoshita, K., Ohtomo, G., Takase, H., Hamanaka, G. et al., (2019).  Treadmill exercise suppresses cognitive decline and increases white matter Oligodendrocyte precursor cells in a mouse model of prolonged cerebral hypoperfusion, Translational Stroke Research, Oct. 12. Doi:10.1007.                             

3Bernardo, T.C., Beleza, J.Rizo-Roca, D.Santos-Alves, E,. Leal, C., et al. (2019). Physical exercise mitigates behavioral impairments in a rat model of sporadic Alzheimer’s disease, Behavioral Brain Research, Nov. 13: 112358.

4Shimada H1Makizako H2Doi T2Park H3Tsutsumimoto K2, et al., (2018).  Effects of combined physical and cognitive exercises on cognition and mobility in patients with Mild Cognitive Impairment: A randomized clinical trial, Journal of American Medical Director’s Association, 19(7): 584-591.

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Light in the Darkness

Light in the Darkness

Regardless of faith, tradition, or background—winter’s darkness calls for increased light. If you have lived with dementia for any amount of time, you feel the darkness at a different level—wishing for light. A common behavioral manifestation for an individual with dementia is night-time wakefulness.  Usually accompanied by agitation, this behavior leaves dementia caregivers overtired and overwhelmed.

Research shows that season and weather significantly affect nocturnal rest for the individual with dementia.1 In this study, the researchers defined nocturnal rest as the five consecutive hours with the least motor activity during a 24-hour day.  Using this criterion, the study showed the most predictable variable of activity.  The findings were that day length and cloud amount were associated with night-time activity. Specifically, nursing home residents with dementia were more active at night on cloudy short days than on clear short days. The researchers concluded that adding extra internal lighting to the shorter and cloudier days could be an anecdote to the night-time wakefulness.2

Research has shown there is much more to the sleep-wake cycle of an individual with Alzheimer’s than weather and day length.  Circadian rhythm, the natural internal process regulating sleep-wake cycle, has been shown to have a bi-directional interaction. Sleep disruption actually influences the cognitive decline in Alzheimer’s disease as Alzheimer’s disease influences the individual’s circadian rhythm.3 The use of melatonin and bright light therapy are suggested as anecdotes to help the sleep-wake cycle.

For centuries, cultures far and wide have worked to increase light in the dark days of winter.  As you enter winter as a dementia caregiver, consider ways to brighten the darkness with bright light and décor reminiscent of the season. Embrace the warmth and light of the fireplace, the light of no-flame candles, and the treats that bring you light. They just might bring you sleep.

Footnotes

1Wahnschaffe, A.,  Nowozin, C., Rath, A.Floessner, T., et al. (2017). Night-time activity forecast by season and weather in a longitudinal design – natural light effects on three years’ rest-activity cycles in nursing home residents with dementia, International Psychogeriatrics, 29(12): 2071-2080.

2Mitolo, M., Tonon, C., La Morgia, C., Testa, C., Carelli, V., et al. (2018).  Effects of light treatment on sleep, cognition, mood, and behavior in Alzheimer’s Disease: A systematic review, Dementia & Geriatric Cognitive Disorders, 46(5-6): 371-384.

3 Saeed, Y., Abbott, S.M. (2017). Circadian disruption associated with Alzheimer’s Disease, Current Neurology & Neuroscience Report, 17(4): 29.

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