Useful Documents (pdf)
Dr Cate in the Media
At this time of year hauntings are not just in old homes. If you are living with an individual with dementia, you may well be faced with ghosts and imaginings that are convincingly real in presentation. Some forms of dementia are more likely to have delusions and hallucinations as symptoms. Your challenge as a caregiver is to validate rather than negate the presence of the man in the bathroom or the re-written biography that includes new players, new scenarios.
It is helpful to define both a delusion and a hallucination. Delusions in dementia world are false beliefs.1 When your 94 yr old mother states that she is waiting for her mother to come home, this qualifies as a delusion. What is critical for you to understand is that negating her belief will not work. In fact, to tell her that her mother died in 1999 will actually make things much worse.
Similarly, hallucinations are better left uncorrected. Hallucinations are incorrect sensory perceptions of objects or events, often visual or auditory. When the bumps in the laminate floor are called bugs, or the sound of a storm outside is called kids fighting—these are hallucinations.
Root causes of either delusions or hallucinations can include medical concerns like presence of a Urinary tract infection or a medication complication as well as social and environmental concerns. Questions to consider:
Negative behaviors are often based in an unmet need that the individual can no longer express. This could be a physical need like thirst, hunger, rest, toilet or a social need like boredom, overstimulation. Take note of changes in the environment, routine, people in your loved one’s care circle. Often these trigger delusions or hallucinations. If you can determine the trigger, you will have
Delusions are often founded in the individual’s biography. Your loved one may be processing a piece of life story that has not yet been resolved. Because of the cognitive changes, the processing is garbled. There may well have been someone under her bed at one point, or under someone she love’s bed. Whether you are aware of the biographical roots or not, the delusion will not dissipate if you dispute it. In fact, she will only get more agitated and adamant. Instead you need to validate.
Naomi Feil, a pioneer in dementia care shared this strategy in her book Validation Breakthrough.3 Her daughter, Vicki de Klerk-Rubin, reinforces it in the book Validation Techniques for Dementia Care.4 To validate your loved one’s delusion seems counter-intuitive unless you consider it from her perspective. She very much believes there is a man following her in the hall. You know this is not true, and you want to clarify that.
But instead you offer her empathy, that must be very unsettling. And she feels heard, Yes unsettling? You aren’t kidding. As you ask her details about this man, you are affirming her. You are validating her reality. Which is comforting. She feels heard and her anxiety will decrease over time. Meanwhile you can re-direct your negative energy into the work of looking for the triggers. Done well, validation provides a win-win for you and your loved one.
Whether you have school-age children, grandchildren or none at all, you are aware that Back to School season is upon us. Even if the summer harvest of heat and produce continues in your community, the start of school is a signal for transition. Living with dementia has its own transitions, many of which we encounter with little to no preparation or schooling. Allow the Back to School season motivate you to seek education to assist you in caregiving.
Research has defined education to be key to sustaining one’s self as a dementia caregiver.1 Whether you seek education from the internet, a local Arden Courts, the library, a memory clinic—seeking it is important to both you and your loved one with dementia.
Studies have shown that internet-based supportive interventions can improve caregiver well-being, confidence, and self-efficacy. This is particularly true when the interventions are tailored to the individual and are made of multiple components.2 Tailoring could be specific to family or individual or specific to type of dementia. An older study reports that the least effective caregiver education is peer-led, or simply support group referral.3 Although emotional support is good, look for resources that are dedicated to proven methods and strategies.
Back to school for dementia caregiving may involve hitting the books. Reading about others who have been on the caregiving journey will help you navigate obstacles that they may have found challenging. A study of educational support showed that caregivers are thirsty for information on the progression of dementia and symptoms as well as any measures available to slow progression.3 The individuals with dementia found education about progression gave them motivation to live.4 Caregivers improved their skills at dealing with symptoms from the educational support.
As you walk the path, you will find that time is less available so your Back to School energies demand premier education. Seek the credentials, the experience, and the longevity as well as the program, class, book, or internet course that will give you the components research has validated. Successfully navigating dementia as either a caregiver or an individual with dementia will require a secondary education like no other. But the very pursuit of that knowledge promises to make the journey easier.
One of my favorite refrains, beside still waters, comes to mind when I think about our wonderful day in El Yunque, Puerto Rico. The lush peaceful feel of the cool green foilage and the magnificent waterfalls remind me of simple and peaceful times for Mike & I. Puerto Rico holds a special place in our memories and our relationship.
Although we are now in the heart of Largo, and the midst of August heat, we are still beside still waters. As a couple living with dementia, things are so much better than they were even a month ago. After two neurologists failed to see the need for anti-anxiety medication, we talked our GP into a very low dose of one that had been quadrupled by the first neurologist. The old saying “start low, and go slow” once the moniker for meds in dementia world, seems to have gone the way of the buffalo. It took our “You tell me what you want, I will write it” GP to give us just the amount of medication to make life pleasant. Added to that strategy is the neuropsychology referral to a psychologist who is helping Mike with Cognitive Behavioral Therapy, and we have a peaceable kingdom. And a grateful one
It feels awkward broadcasting this. But as I questioned myself on why I felt awkward, I thought Why is it we are faster to share the negative than the positive?
Add to that the email from a memory cafe family member that said “I know you are struggling too . . .” and I found that it was important for me to share the good stuff. There is too much of the negative dementia stuff studied, reported, shared and far too little of the positive.
Now keep in mind that yes, this was not how we imagined August would be. We have downsized and upsold simultaneously to have a bit of time in MD, but we are still looking forward to our trip, despite how different it is from its original blueprint.
Adaptation is the number one survival skill in life, and also in dementia world. We have adapted to the change in plans for vacation. We have adjusted to the possibility that Mike’s joint pain precludes hitting the road with the RV, at least for now.
But all of that is water down the falls compared to the serenity we have in our day-to-day lives. Just for today, we can savor the still waters, soak in the cool mist, and feast our eyes on the green life right before us. We are honored and blessed to have so many folks walking alongside of us
When you think of dance, what comes to mind? Is it the foxtrot, waltz, tango or salsa? Maybe you think of Zumba or Jazzercise. Or maybe you think of the weekly program, Dancing with the Stars.
But did you know that dance is a great brain health strategy? In fact, a study looking at better memory over the course of fourteen years found that dance was a lifestyle factor associated with better memory. The results of this study show the importance of dance in vascular health as well as cognitive function. When eleven different types of physical activities were assessed, only dancing actually showed a lowering effect on dementia risk.
Dance combines physical, cognitive and social engagement that improves each factor. Physically, dance has shown improved balance, and functional capacity. Socially, dance has been shown to enhance quality of life. Improved balance means less risk of falling.
Dance even works for those with Alzheimer’s dementia. Salsa dance therapy had a positive effect on balance, gait, and fall risk in sedentary patients with Alzheimer’s dementia. Six months post-study, no falls had been reported.
Balance and locomotion were positively affected for Parkinson’s dementia patients as well. A study looking at Argentinian tango and American ballroom found that the tango and the waltz/foxtrot groups had improved walk distance and backward stride. The tango group actually improved as much or more than the waltz/foxtrot group.
If you are a dedicated Dancing with the Stars fan, you will be pleased to know that observing dance has been shown to enhance well-being and focus. A study with participants with Alzheimer’s showed improved well-being. Similarly, a study with participants with Parkinson’s has shown that watching dance improved eye focus.
As important as the cognitive and physical benefits of dance are the psychosocial. A study of dancing in care homes showed a decrease in negative behaviors, and an increase in social interaction and enjoyment for both residents and care staff.
Research on dance has a range of outcome with some variability due to study structure. With music being a key component of dancing, it is difficult to separate out the effect of music on the outcomes. The reduction in stress, the increase in serotonin and the improvement of quality of life factors all work together to show dance as a hopeful component of a healthy brain and a positive lifestyle factor.
References available upon request.
From ghoulies and ghosties
And long-leggedy beasties
And things that go bump in the night,
Good Lord, deliver us!1
This traditional Scottish prayer can well be applied to October celebrations when living with dementia. With Halloween decorating a phenomenon that increases every year, it is important to consider the impact of Jack O’Lanterns, skeletons, mummies, witches and vampires.
First remember that these expressions of the holiday are more numerous and vivid than they were in your loved one’s early life. Halloween spending has grown over the years.2 With less Halloween energy in your loved one’s past, the reminiscence value from Halloween décor will be minimal.
Not only will these images not enhance living with dementia, they easily can add to environmental stress. Whether it is a cobweb draped over a door or a talking witch, these decorations may in fact seem like real ghoulies and ghosties. The brain changes that occur with Alzheimer’s and related dementias include changes in vision and perception. Hallucinations and delusions may leave your loved one unable to distinguish between fantasy and reality3.
Flashbulb memory of a particularly frightening time in life can also make what you see as a neutral holiday image quite troubling to your loved one. An example, clowns once seen as fun became frightening after a clown killer in Stephen King’s movie It.4 The memory of fear, horror, terror was associated with the face of a clown.
Flashbulb memories are detailed and vivid memories of an occasion that is retained for a lifetime.5,6 An image or a sound can send a person back to the feelings of the memory. Back to things that go bump in the night.
As you prepare to decorate for Halloween, it would be best to choose decorations that are less likely to frighten. Rather than Jack O’Lanterns, why not pumpkins? Rather than cobwebs and witches, why not cider and candy corn? Have a Halloween that is positively memorable.
6El Haj, M., Gandolphe, M.C., Wawrziczny, E., & Antoine, P. (2016). Flashbulb memories of Paris attacks: Recall of these events and subjective reliving of these memories in a case with Alzheimer’s disease, Medicine (Baltimore), 95(46): e5448.
I recently heard a speaker compare Redwood roots to caregiving. Having been to San Francisco and seen California Redwoods, the comparison impacted me. I have shared that speaker’s piece on social media. But in reflection I wanted to share insight based on my first foray into truck gardening. We were young parents, financially strapped, wanting to get our hands in the dirt. So we got the landlord’s permission and began a small garden. In that well-marked patch we planted all sorts of vegetables and one row of corn. It was as others’ were harvesting their corn, that we realized something was amiss. We had healthy stalks, but no corn. In sharing this with our retired landlord, he told us about the birds and the bees. We proceeded to have two more children, so his sharing was very helpful:).
But corn needs to be planted in a patch in order for the breeze, the bees, the whatever to cross-pollinate which results in corn on the cob. One row will not be able to produce corn.
Caregiving for a loved one with dementia can be done alone. But it cannot be done as productively, with as much joy, with as little stress as it can be done with others. As I prepare for the Maximizing Energy caregiver support group at Arden Courts, study after study after study shows—-social support, and social network and education are vital to a caregiver’s sense of mastery, self-efficacy, and mental health.
Yes, you can be the lone row of corn, you will make a nice shuck stack for Halloween . . . but you will be missing the corn on the cob with butter.
A person’s a person, no matter how small! This is Horton’s lament when he tries to get the jungle animals to realize that there is an entire civilization living on a clover. This classic childhood philosophy book tugs the heartstrings of all professional caregivers and healthcare advocates. We too are often trying to protect what is often misunderstood. For Alzheimer’s advocates, Horton’s lament resonates with our own refrain, A person’s a person, no matter what stage! We see the windows inside that most people fail to see or try to discover.
Horton came to mind this week as I heard of healthcare professionals refuting the need for hearing aids for individuals with dementia. Like Horton, I was shocked and disturbed that my very own tribe was missing the facts about hearing loss and Alzheimer’s. Like Horton, I knew the people in my personal Whoville need to be heard . . . and to hear.
Being Dr. Cate, I went to the research. Most significantly, more and more research is showing an association between cognitive decline and hearing loss. This association is being clarified with continued research, but suffice it to say, denying someone assistive devices because of cognitive decline is foolish. That is a Horton-ism, not an academic result. No study uses the adjective foolish.
But what the studies do say is that hearing impairment precedes cognitive decline, it is unclear if the hearing loss is an early marker of dementia or a modifiable risk factor.
Research shows that an individual with Alzheimer’s is experiencing brain decline that affects each of his senses. We know that an individual in the early stages of Alzheimer’s is processing approximately only 1 out of every 4 words. So why would we deny him the ability to hear even the one out of four?
A person’s a person, no matter what stage!
As a Thanatologist, I know that the very last sense to die is auditory. When the person appears to be vegetative, they can still hear. As a recreation therapist and palliation provider, I used music to reach beyond the decline and touch the person. Crossing over has been made gentle due to the impact of hearing.
I know that it is difficult to maintain hearing aids for the individual with dementia. I too have been on massive laundry searches looking for the discarded item. I also know that part of the discard is because the batteries are low. Some form of physical discomfort prompted its removal. I also know how difficult it is to have an individual with later stage dementia tested and fitted for the device. Fortunately we have some audiologists willing to make house calls.
Horton heard a Who . . . can you allow the Who’s to hear Horton?