by Teepa Snow, 2021
Mom’s OT, Kaylee, recommended Teepa Snow’s book, “Dementia Caregiver Guide: Teepa Snow’s Positive Approach to Care techniques for caregiving, Alzheimer’s, and other forms of dementia,” but the library didn’t have that one. So, I got this one from the library and checked it out. It’s compassionate, caring, loving, accepting, positive, and lots of information on the brain of a person with dementia. Basically, the brain is shrinking and dying. There are 4 truths about all of the 120 types, forms, and causes of dementia:
- at least two parts of the brain are dying
- It is progressive and will get worse
- It is chronic-there is no cure or treatment
- It is fatal
“The neurons in the brain are deteriorating and dying.”
“It is now generally acknowledged by members of the dementia care culture that frontal temporal dementias are the most common type of young onset dementia. These conditions, in combination, are actually more common than young onset Alzheimers. The Association for Frontotemporal Degeneration (theAFTD.org) is a great source of up-to-date information and support for those who are trying to adapt to life with some form of frontal temporal dementia.”
“One finding of interest is that gut bacteria and gut health is tightly connected to brain health, at least for animals. That means that what many of us accepted for quite some time is beginning to be recognized as being true: the blood-brain barrier is not as solid as previously believed, and what we eat and how much we eat really does matter for brain health and well-being!”
“By the late-stages of the condition [dementia], the primitive brain is struggling to hold it together. It is not able to cope with all the internal destruction and missing wiring, and control over the body’s functions are falling apart. Survival is more and more difficult. Ultimately, the primitive brain is simply not able to manage all of the systems and the person is not able to stay alive. The body’s core functions are failing.”
“The lower picture shows the ultimate result of Alzheimers. The wiring is nearly gone. The ventricles are huge, storage capacity is limited, and getting information in and out is challenging and erratic. The desire to be respected and listened to is not necessarily affected, but the ability to use executive control systems is nearly impossible.”
“Damage to the hippocampi tricks the amygdalae into acting quickly, and often with erroneous information, even early in the condition: [examples]
-“It has actually been two days, not two hours, since you took a shower.”
“Later in the condition, the primitive amygdalae may well cause you to:
-“Become totally intolerant of background noises in a common space or group gathering, as they can’t be sorted out from foreground sounds and are frightening or overwhelming.”
“With a healthy brain, I would be starving if I didn’t eat. I would be dying of thirst if I didn’t drink something. The person living with dementia is not in the same state as we are. They aren’t dying because they aren’t eating or drinking. They aren’t eating or drinking because they are dying. It is time for them to leave us. But, if we keep demanding that for our comfort they take in more, then they are only staying here for us. I believe we have the responsibility of asking ourselves and asking that person: “What have they not done that they need to do before they go?” Be truly curious about the possible answers, and attempt to solve the puzzle, if possible. And then, be prepared to allow the person to go or stay based on what you discover and can do.”
“The area outlined in blue is where the hearing function is located. It does not typically change with dementia. The biggest change in hearing is the ability to localize, to know where the sound is coming from, because that requires communication between the two sides of the brain where the wiring is damaged.”
“Look at the red shapes. There are drastic changes between the two images. This is where we keep our vocabulary, comprehension, and speech production functions.”
…”What has changed is the person’s ability to understand the words, know what those words mean, and create accurate words back to you.”
Vision changes with dementia. “There is so much that can and does go wrong with vision and visual abilities in the world of dementia, it is easy to miss how helpful the remaining visual abilities can be.”
“It helps to be aware that although people living with dementia exhibit curiosity, many lack a sense of safety awareness.”
“There can also be changes in the ability to accurately identify smells and tastes as well as changes in a person’s awareness of dangers associated with particular situations or items. Every sensory experience is changing for the Person Living with Dementia. This impacts behavior, the giving and receiving of communication, and therefore, relationships with others. If we truly understand this, and are willing to observe and stretch ourselves by looking at what’s happening through the lens of curiosity, we can then further understand and choose to support and care for others in ways that make more sense. These changes in perspective will improve relationships and assist in setting realistic goals for care partner interactions. Most importantly, these changes give the Person Living with Dementia – who is doing the best they can with what they have – a greater sense of value, individual choice, and sense of control throughout their life, as they are living it.”
She talks about how the hippocampus is responsible for people being able to find their way around. The hippocampus deteriorates with dementia. It’s important they have a safe, familiar space and routines and landmarks, and if a change is necessary to a safer place, it’s important to do it before the person is too far gone, so they can “get the feel for the new place and people…”
“Finally, it is always important to know that at the end of a person’s time on this earth and their residence within the temporary house we call their body, it is still important to provide that which feels like a save haven. It is the assurance that when I can no longer function within my house, you can provide the friendship, familiarity, and forgiveness hat allows me to know I can let go and move on. Theater you will miss me, still love me, and honor me. And most important, that in letting go, I am not giving up and neither are you. You are simply offering me the opportunity to find release and completion, acknowledging that our work is done, and all will be well for all of us.”
“Six out of ten people with dementia will wander.”
“Anyone who has memory problems and is able to walk is at risk for wandering…Wandering and getting lost is common among people with dementia and can happen during any stage of the disease.”
To reduce the risk of wandering:
- Provide opportunities for exercise to reduce anxiety, agitation, and restlessness
- Ensure all basic needs are met (toileting, nutrition, thirst)
- Carry out daily activities such as folding laundry or preparing dinner, to provide daily structure
- Reassure the person if he or she feels lost, abandoned, or disoriented
- Avoid busy places that are confusing and can cause disorientation such as shipping malls
- Place deadbolts either high or low on exterior doors (only if you are home with the person living with dementia)
- Control access to car keys (a person living with dementia may not just wander by foot)
- Do not leave someone living with dementia unsupervised in new surroundings
- Consider sensitively telling local shopkeepers and neighbors whom you know and trust about the person’s dementia and give them your contact details – they may be able to keep a look out
Mom should definitely always have her Lively button on, and when she goes for walks outside by herself, carry her phone.
She doesn’t recommend sleeping pills – they can cause incontinence, falls, confusion and memory problems.
She has a chapter on the repetition inherent in dementia – asking the same questions over and over again, telling the same story over and over again. “I am trying to learn something new….This is important to me!…I think or believe someone else will want me to know this or do this and I want to please them…I am practicing something…I am doing it over and over again because it is simply something to do…”
There is a chapter on how to get someone with dementia moving. Deciding to get moving is very complex and involves a lot of the brain.
There is a chapter on Delirium, Depression, and Dementia.
- An acute illness or medical emergency (Delirium)
- Symptoms of a mood or emotional condition (Depression)
- A chronic, progressive, and terminal condition that will eventually rob a person of their cognitive abilities, is vital in providing the best possible care and responding effectively when changes are noted. (Dementia)
“It is vital for all concerned to recognize that as the condition of dementia reaches the late-stages, the destruction of the brain and its ability to guide and coordinate even basic functions of the human body will create an internal environment that causes delirium, and no matter how many times we fix the immediate issue, we cannot fix the dementia, which is what ultimately causes systems to fail. Therefore, learning the art of letting go–not giving up, but letting go–is an essential skill that all care partners and supporters must master to offer best quality care and advocacy.”
“One caution–depression is both a chemical and a cognitively driven condition. It isn’t that the person is not trying, it is that the brain chemistry may be making it almost impossible to get the needed energy or sustain the focus without external support and chemical enhancement. This means that most depression will need to be treated with a three-part approach:
- Increased physical activity that provides input to the brain
- Increased talk therapy that is supportive and provides positive reinforcement inside and out
- Support (natural and chemical) to help serotonin and dopamine chemistry in the brain become more balanced and effective”
When a person with dementia starts speaking inappropriately, it’s again because the part of the brain that governs socially-appropriate language has died or is dying and they cannot access the appropriate words. The area that houses foul, crude language is still functional though. “It’s not that I want to use those words or phrases, it is that those are the words that are still available, I may be feeling distressed or am seeking to share something, and I can’t access my alternatives or control the impulse.”
“So, if at least two parts of the brain are dying, that leads to many combinations that can be affected. On top of that, there are areas within each of those sections that will be affected differently. For instance, with Alzheimers you will probably notice memory loss earlier in the condition, but with Frontotemporal Dementia, memory loss won’t be noticeable until the disease progresses much further. Lewy Body Dementia can often come with hallucinations, but when an anti-psychotic medicine is used to combat the hallucinations, it can prove dangerous or fatal. Vascular dementia is very dependent on the physical health, diet, and exercise of the person living with dementia. With some types of dementias, a person may only live for six more months, while with other types, a person may live another 30 years.”
“There are many aspects to vision that are going to be affected by various forms of dementia, but one that is almost universal is that the amount of data you can take in and process at any moment in time will be more limited.”
When a person wants to go home, they want a place that is Friendly, Familiar, Functional, and Forgiving.
If someone becomes aggressive, they have most likely felt threatened by something. These things can cause irritability, defensiveness, or aggression:
“Having an unmet physical or emotional need, being startled, having something done to you that you didn’t understand or agree to, trying to express yourself and people can’t understand you, feeling judged by others.”
Lots of good information, kind of given in a haphazard, unorganized format. That’s why I’ve included the pictures and lots and lots of quotes. The pictures are enlightening. The quotes show how loving she is – very caring and compassionate to People Living with Dementia.