In mid-October 2023, Stanford’s Lewy Body Dementia Research Center of Excellence and Brain Support Network co-hosted a hybrid symposium on Lewy body dementia (LBD) caregiving. The second talk was by Christina Irving, LCSW, with Family Caregiver Alliance. She addressed how to communicate with your loved one with dementia. Ms. Irving said that it’s important to be as flexible and adaptive as you can. She shared common pitfalls, ways to cope with difficult behavior, and how to communicate with your loved one when they are experiencing delusions and hallucinations.
Below are my paraphrased notes on Ms. Irving’s talk, as well as the question and answer session afterward.
-- By Jordan Dagan, Stanford Parkinson’s Community Outreach
DEMENTIA AND FLUCTUATIONS IN COGNITION
Though memory problems are often associated with dementia, this may not be your loved one’s primary concern. Dementia also affects spatial and depth perception, sensory perception, reasoning, personality, hearing and language, and learning. These may all be affected to different degrees, at different times. How you communicate with your loved one will vary, depending on what they are experiencing, their personality and mood, other medical conditions or Parkinsonism, sleep difficulties, problems regulating their body functions, apathy, and other factors. Your loved one’s working memory may be affected by poor attention and poor information processing, which are also often caused by dementia. It is important to improvise, and meet your loved one where they are. Their feelings and symptoms may change moment-to-moment.
It’s especially difficult to see someone you know very well developing dementia. Memory loss may be hard for others to perceive, especially those outside the immediate family. Most people are unsure how to change and adapt as their loved one’s brain is changing. Old ways of communicating may not work, especially casual comments or indirect communication. Your loved one’s cognition will also vary throughout the day, leaving their family without a clear idea of what to expect. Some family members may wonder if they’re faking their symptoms, because they perform very differently at different times. It’s vital to remember that the changes are caused by the disease. Your loved one isn’t being difficult on purpose, and is not attempting to manipulate any person or situation.
Remember that the strategies you found successful today may not work tomorrow, or may not work as well as they did today. Be as flexible as you can when communicating with your loved one, and think ahead to brainstorm a variety of ideas you might use.
Common pitfalls when caring for someone with dementia:
- Expecting them to reason rationally, and/or to understand your explanations.
- Expecting their reality to be “objective,” and/or the same as yours.
- Expecting them to keep agreements. Cognitive impairments to memory and focus will interfere with your loved one’s ability to remember agreements.
- Overestimating or underestimating what the person can do, across different areas of life and functioning.
- Neglecting your own needs.
- Asking questions that require short-term memory (ex. What do you think about what I just said? What did you have for breakfast?).
The following is a list of thoughts people tend to experience when acting as a care partner for someone with dementia. These thoughts fuel frustration.
- They know better than that!
- That must be on purpose!
- They’re not listening.
- I did this already.
- They could do that yesterday, so why can’t they do it today?
- They’re not doing all they can.
- They don’t say thank you! They treat me like a servant.
When these thoughts are causing stress, take a moment to acknowledge your feelings. The situation seems annoying, tiring, frustrating, etc., and this is a normal response! Remember that your loved one is not in control of their behavior, that their dementia is caused by a disease, and the situation is not their fault. Think of how you can get your needs met while acting as their care partner. Consider building a team for getting help caring for your loved one.
A behavior most often has a cause. Look for what triggers your loved one to do things you don’t expect, to find out more about why your loved one is behaving that way.
They may be looking for the familiar. Consider what you know of the person’s background and previous environments.
They may be seeking something to do, especially if they’re apathetic.
They may be trying to manage their physical needs, or trying to manage pain. Dementia often causes difficulty understanding internal feelings, and articulating their needs to others.
If your loved one is agitated or having outbursts, they may need to express fear or anger, and may have no other way to do it.
They may want to maintain personal control, especially because the disease limits their ability to manage their own time and resources.
When you’re faced with difficult behavior from your loved one, you may want to find a way to make them stop the behavior as soon as possible. If the behavior doesn’t put your loved one at risk, take a moment to consider whether the behavior is a problem for your loved one, or for you? The goal as a care partner is to accommodate your loved one, not control them. You cannot change your loved one, only your response to their behavior.
If the difficult behavior is new, or began suddenly, check in with your loved one’s doctor. Your loved one may be exhibiting the new behavior because of an illness, or because of a change in medication.
Get support from others! Everyone has expertise. On our own, we tend to remember the things that don’t work, rather than the things that did work. When giving advice to others, we tend to remember the strategies that worked well.
HALLUCINATIONS AND DELUSIONS
For people with LBD, hallucinations are usually visual. Delusions are false beliefs, judgements, or perceptions.
The following are some tips to reduce the frequency and/or intensity of hallucinations:
- Remove clutter, and improve lighting. This will reduce the items around the home your loved one could mistake for something else. Improving lighting is especially important for safety at night.
- Simplify their environment, to help them not be overwhelmed.
- Overstimulation and exhaustion may be contributing, so build in time for your loved one to rest in between events and errands.
- Some people with LBD benefit from using labels or cues to remind the person of important facts, or help them navigate their environment. However, some may not perceive the notes, may not be able to understand them, and may not remember what they said.
- If your loved one wanders, and this is creating a safety issue, equip doors with safety alarms or locks, or install motion sensing lights.
The following are tips for interacting with your loved one, while they are experiencing hallucinations or delusions:
- Remember that your loved one may or may not recognize that a hallucination or delusion is not real. Don’t contradict their belief, and don’t reinforce it either. This is especially important if they don’t ask you for help understanding whether something is real. Arguing with your loved one about the reality of what they’re seeing may make them more anxious and distressed. Long explanations won’t be understood.
- Respond to your loved one’s feelings about the hallucination or delusion, rather than focusing on the specifics of what they’re experiencing.
- If your loved one is distressed by what they’re experiencing, remain calm. Try to provide them with reassurance. They may not feel safe, depending on the hallucination and how the person interprets it.
- If a loved one isn’t distressed, no worries! Just roll with it, and try to adapt.
- Try to redirect or distract your loved one. You may be able to offer an alternative behavior which is easier to manage, or less distressing to your loved one.
- When you try to distract your loved one, you must connect with them emotionally first. First, acknowledge what they’re experiencing. Then, try to shift them to something new. Moving into a different room can help shift their focus.
- It is okay to alter the truth. The goal is to join in their reality, and meet them where they are. It’s more important that they’re calm and not in danger, than that they understand something isn’t real.
OVERALL PRINCIPLES FOR CARING FOR SOMEONE WITH DEMENTIA
You cannot control what’s in your loved one’s brain, and you cannot control their perception.
Remember that your thoughts, attitudes, and actions do hugely affect the person with dementia. Maintain empathy for your loved one. Having dementia can be scary! Your loved one is likely struggling with losing the control they’ve had as an adult for most of their life, losing their executive functioning, not being able to depend on the outside world for cues, and needing to move at a slower pace than their family members.
Creating a personal connection with your loved one is more important than the content of a message. They may not remember the specifics of what you tell them, but they remember the mood of relationships.
Caring for someone with dementia is often a balancing act between holding on to what you love, and letting go of unrealistic expectations. To maintain a positive relationship with your loved one:
Spend time acknowledging their strengths and preferences.
Give them compliments, to help boost their self-esteem and confidence.
Break tasks down into small pieces, and give your loved one extra time to complete each piece.
Be patient, understanding, and creative.
When you’re struggling, take a deep breath and try again.
Make sure your needs are met.
Take joy or fun in simple things as much as you can. Make tasks into games.
Build in time for hobbies and pleasant experiences.
Give yourself credit for what you’ve accomplished!
Share your accomplishments with others.
QUESTIONS AND ANSWERS
Question: How do we avoid infantilizing our loved one, especially as their spouse?
Answer: Simplifying tasks helps our loved ones, and we usually associate simplifying tasks with working with kids. Remember that your loved one has been in control of their life for a long time, and they have the experience that comes with being an adult. Continue to talk in the same tone to the person. When you offer help, do it calmly rather than acting over excited. You don’t need to make it “fun” the way you might with a kid. Give them more time to process information and finish tasks.
Question: Please share examples of how to cope with our loved one’s hallucinations and delusions, especially examples of how to enter their reality.
Answer: Someone’s loved one once saw kids outside which weren’t there. This was around dinner time, and she wanted to invite them in for dinner. Her care partner “went to talk to the kids,” then reassured her that the children’s family already had dinner plans. Reassuring the person with dementia that you will take care of the situation is often helpful. You may need to improvise!
Question: How should we determine if our loved one needs care beyond what can be provided in the home?
Answer: This varies by person, and depends on what outside help is available, and how the care partner is doing. Is the behavior of the person with dementia a safety hazard for the care partner, or other people in the home? If the person with dementia and their care partner are not mobile and safe in the home, that may be an indicator that further support is needed. If the care partner’s health is suffering, it may be time to get more help.
Question: Should someone with LBD ever be left alone at home?
Answer: This depends on the day, on the stage they’re in. They might have a cognition fluctuation that has them not functioning properly alone. Consider what you observed of their worst functioning lately, and whether they would know how to handle an emergency in that state. Consider whether they would be doing something that could become hazardous, such as cooking. Realistically, you cannot be with your loved one all the time, but you also need to keep the home safe. The situation is not going to be perfect.
Question: How can we handle delusions involving the spouse having an affair?
Answer: Some delusions may be very difficult to hear, but many of them are common among people with dementia. Attending a support group for care partners may be helpful. Consider if you’re responding to a delusion based on the feelings of your loved one with dementia, or responding based on your feelings.
Respond to their feelings in the moments that the delusion comes up situationally or in conversation. You might be able to help them rationalize their concerns, especially if they have some awareness of the fact that they’re delusional. If the belief is very firmly held, you might not be able to change their feelings in the moment. You may need to give them some space to sort through their feelings. During times that they’re not so attached to the delusion, reassure them that you’re happy as their spouse. They might not remember the specifics of the conversation, but they will probably understand the tone.
Question: We’re getting help from in-home care professionals, but our loved one is rejecting them, and keeps firing them and throwing them out. What can we do?
Answer: This is a very common situation to be struggling with! The start of having in-home care is the hardest part. It may be helpful to introduce the care professional as a friend, a helper for the care partner, or perhaps a cleaner. Introduce the helper while you’re still present in the home, to see how it goes. It will probably help to find an activity they can do together, to start your loved one building a connection with the person. If the person with dementia has a favorite activity, find a care professional who has that same skill or hobby.
Consider whether your loved one remembers that they’re firing the in-home helpers. More memory loss may actually be helpful here; if they don’t remember specific helpers that they had an objection to, that person might be able to come back later. Consider why your loved one is firing them. Are they agitated about the issue, or do they simply say that they don’t need help? The care professional may be able to negotiate, or come back later.
You may be able to get a doctor to write a letter stating that having in-home help is necessary for your loved one’s care. Making it official might address your loved one’s concerns.
Question: My loved one asks me the same questions repeatedly. What can I do about this?
Answer: Remember that they don’t remember asking you previously. For them, it’s the first time they’re asking, and they don’t mean to annoy you. Consider why the question keeps coming up. Are they anticipating an event? Does it come up because they’re unoccupied? Repeated questions are usually because of confusion or anxiety.
It may help to share the information in a different way, or write a note to them containing the information they need. A note may work well for some with dementia, but not others. Redirecting them to a different activity may buy you some time between questions.