Living With Dementia: 10 Things Doctors Should Tell You About Dementia

After decades of providing high-quality, licensed caregiving for dementia clients and their families, we’ve learned there are so many things doctors tell their patients about dementia -- but they don’t. The emphasis becomes “cognitive decline” and the never-ending clinical lists of things to do to move forward. 

We wish that more physicians and other clinical healthcare professionals would provide more helpful, compassionate, and human-centered education, resources, and support that would help provide more inspiring and meaningful lives.

7 Things That Support Living A More Meaningful Life With Dementia

Here are seven things licensed caregivers wish doctors told their patients about living more meaningful lives with dementia. 

1. Brain changes caused by dementia cause more than just memory loss

Because we live in such a performance-driven and data-focused society, our clinical system places so much emphasis on the effects of memory loss - and how to combat that - but fails to really provide the everyday information and tips that support positive engagement and relational connection. 

Yes, there’s no doubt that dementia causes memory loss; however, there is far more that happens as a result of dementia-related brain changes in various processing centers. Understanding those changes can foster more connected and less stressful relationships.

We’ll talk about some of the most significant points below.

2. Peripheral vision loss requires (forward) face-to-face approaches from caregivers & loved ones.

One of the first changes happens in the visual processing centers. This includes a shrinking of peripheral vision as well as depth perception. Depending on when your loved one was assessed and diagnosed with dementia, some of these changes may already be noticeable.

As a result, people with dementia can be very startled, increasing their fight/flight responses if they are approached from the side or the back. Even a loving hug or caress from behind or a pat on the shoulder from the side can cause a seemingly “violent” response. In fact, it’s just an instinctual fight mode because the individual is so startled.

Caregivers should begin practicing their approaches from the front and training loved ones and visitors to do the same. That way, the person can see someone coming up to them. Slower approaches are best, and reaching out a hand to invite them to connect is far better than automatically taking their hand. Let them show you what is safe for them, rather than assuming.

Similarly, depth perception changes in ways that increase trip/fall hazards. Curbs may look higher or lower than they are; the black squares in a checkered tile floor can look like holes; even food on a plate loses dimension. So keep this in mind as you’re creating safer and more accessible living spaces for loved ones with dementia. 

3. Sound quality shifts and changes, but people with dementia aren’t deaf unless they have bona fide hearing loss.

Our brain works hard to decipher where sounds are coming from. That’s how you know the difference between rain pattering on the roof, versus water dripping from a faucet in your bathroom, or that the voice you hear talking is in the other room and not in front of you. This changes with dementia.

As dementia progresses, the brain loses its ability to filter sounds and orient them to a source. This means that all of the sounds are happening simultaneously, without much to distinguish them. The effect is chaotic and disorienting. If you can’t look in the person’s eyes when you’re speaking or calling to them, odds are they can’t always tell where you are. 

And, of course, less is more, so spend more time in quiet, with more focused - rather than varied - stimuli, and in smaller or less populated areas. Getting out in nature is always a good idea and can be very soothing. More time in calm, soothing, and routine environments - and in the natural world -benefits the circadian rhythm and can reduce episodes of sundowning syndrome.

4. They only have so much dopamine in a day

Along with heightened vulnerability to over-stimulation (visually and sound-wise), which requires a tremendous amount of processing energy, people with dementia produce and transmit less and less dopamine. This is especially true for those with Lewy body dementia, Parkinson's-related dementia, and Alzheimer’s disease.

While social engagement is critical in helping to maintain healthy and meaningful connections with loved ones who have dementia, too much social stimulation or activity can “use up the dopamine” and require equal periods of rest and calm. Once dopamine levels are depleted, the pleasure and reward centers are less likely to fire and can result in more agitation, anxiety, or even anger/violence.

5. Certain pathways remain intact until the end

While some processing centers and memory pathways deteriorate over time, others remain robustly intact. While some of these are very positive, favorite songs or hymns, memorized poems or prayers, rhythm and even dance choreography, etc., others are less pleasant (expletives, sexual slurs, racial slurs, other things that they never would have said before). 

This is par for the course and we always try to focus on - and bring out - those positive pathways, while never taking the negative ones personally. That said, if a spouse or family member becomes unpredictably angry, violent, or physically/emotionally/sexually abusive, it’s imperative that you get more support. If you or others are in danger, call 9-1-1 and let them know the person has dementia and is in a violent state. Otherwise, we recommend creating a “just in case” response plan with their primary care physician or neurologist that outlines what to to, how to handle it, and the next best steps to keep everyone safe.

6. Remember that you can change; they cannot

In the early stages of dementia, life will probably continue much as it always has, with a few modifications and more emphasis on long-term care planning. However, over time, brain changes cause changes that your loved one has no control over. You, other caregivers, and their friends/family are the ones who must commit to educating and learning about all of the positive ways to support someone with dementia or Alzheimer’s, and the the ways that you can change your mindset, intentions, expectations, and interactions to support the one you love.

We’ve talked about a few of them in the tips above. Over time, you may also consider:

• Having a roll of masking tape and colorful Sharpies at the door so anyone who visits, regardless of how close they are, can make a name tag and wear it on the center of their chest. This helps your loved one avoid embarrassment or confusion when they know the “should” know a name but can’t.
• Instruct all caregivers to always introduce themselves every time they enter the house and point to their name tag.
• Using a vareity of therapy modalities (reminscence, music, art, all kinds of play, games, dancing, etc.) to help them express themselves in all the ways they can.

We also recommend connection with high-quality dementia education and support via resources like:

• Teepa Snow’s Positive Approach to [Dementia] Care.
• Alzheimers.gov’s Tips For Caregivers & Families of People With Dementia.
• Local and virtual support groups for individuals with dementia and/or their caregivers.

7. Minimize words and monitor non-verbal body language

The statistics around dementia and word loss are startling. By the time someone is transitioning from early to mid-stage dementia, they’ve lot about 25% of their word retention. So, that means they may only be taking in about three out of every four words you say to them. If you speak fast or in an intense rush, the number diminishes. By the time they are entering the later stages, they may only really get one or two words out of every four. This is like a word salad - everything is jumbled - so you can imagine the level of irritation or frustration that accompanies that. 

Being clear (but not yelling), and concise is key. Actions and energy may speak far more than your words, so monitoring non-verbals (minimizing things like eye rolling, voice raising, dramatic hand/arm gestures, etc., can help them to remain calm and absorb more of what you’re saying.

Over time, mimicking or demonstrating what they should do (for example, putting the bocci ball in their hand and showing them how to roll it so they can mimic you), can become far more helpful than repeating the same instructions (“just roll the ball!”) repeatedly. 

HomeAide Home Care Can Support Your Family’s Dementia Care Plan

Enlisting support from a licensed caregiving agency can make all the difference when it comes to getting the support you need while caring for a loved one with dementia. In addition to providing respite care, and increased services as needed, HomeAide Home Care can also help you create strategies that enhance connection and minimize stress, overwhelm, and negative or interactions. 

Schedule an in-home assessment to learn more about how customized care improves the lives of anyone living with dementia and their caregivers.