Someone you care about may have dementia

Questions and strategies to help you have a supportive conversation when someone you care about may have dementia.

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This is one of a series of topics in the Supportive conversation library. Review the guidelines including what to do if you are concerned for another’s safety before engaging in the conversation.

What do you notice?

Someone you care about seems to be having challenges with their cognitive functioning. Perhaps you notice forgetfulness such as having difficulty preparing a meal or forgetting the right word to use while speaking. Maybe at times you notice they are disorientated, don’t know what day of the week it is, or are getting lost in a familiar place. At times you might notice them exhibiting impaired judgement such as wearing the wrong clothing on a cold day or misplacing things by putting them where they typically would not go (i.e. putting an iron in the freezer). Or perhaps you observe their moods are increasingly unstable and swinging quickly to frustrated or overwhelmed.

What do you need to understand?

Someone you care about seems to be having challenges with their cognitive functioning. Perhaps you notice forgetfulness such as having difficulty preparing a meal or forgetting the right word to use while speaking. Maybe at times you notice they are disorientated, don’t know what day of the week it is, or are getting lost in a familiar place. At times you might notice them exhibiting impaired judgement such as wearing the wrong clothing on a cold day or misplacing things by putting them where they typically would not go (i.e. putting an iron in the freezer). Or perhaps you observe their moods are increasingly unstable and swinging quickly to frustrated or overwhelmed.

Dementia is caused by damage to brain cells. Often, this can’t be prevented because we may not know exactly what has led to someone’s dementia. There are also some risk factors for dementia – including age, race, and genetics – that can’t be controlled.

To stay aware of potential signs of dementia, review the warning signs as early identification is beneficial to its long-term treatment.

What do you need to consider?

Dementia diagnoses are often met with fear and distress for both the individual and those who care for them. We live in a world that values cognitive ability and it can be difficult to imagine living well with impaired cognitive functioning. The value placed on cognitive functioning has also contributed to the stigma attached to having dementia which has influenced people’s perception of those with dementia as difficult to relate to and as having challenging behavior to navigate.

While someone with dementia might behave and function differently than they did before its onset, this doesn’t mean that they can’t still live a fulfilling life or don’t desire close relationships. People with dementia still have emotional and relational capabilities which, when stimulated, provide a sense of well-being for the individual. Factors such as feeling safe, having a sense of belonging and feeling valued help someone feel well in life. This means that relationships are key to helping people with dementia feel and live well.

If you think someone has dementia or is experiencing it, consider this – challenging behavior for someone with dementia is often a result of an unmet need that they were unable to communicate clearly. Frustrated, uncaring or disrespectful behavior towards someone with dementia does not make them feel safe, understood, or supported. Approach your interactions with someone with dementia from a lens of empathy of how it would feel to be confused or unable to communicate clearly. Be open to being taken on a journey of discovery to understand their needs and how to provide support in that moment.

Engaging in a supportive conversation?

Have the right mindset

Come into the conversation from a supportive place. Be careful not to let your own hidden agenda, such as wanting to fix or influence the individual, play a role. Avoid “you” statements, such as “you always do…”. These can make the person feel judged or invalidated. Be curious and approach the conversation with the mindset that you don’t know anything about their experiences.

Questions to check your mindset:

  • What are my assumptions about this situation?
  • How will I keep my assumptions out of the conversation and be supportive?
  • What do I hope to achieve by having this conversation?
  • How can I keep my own desires for an outcome from interfering with my ability to be supportive?

Notice

Notice changes in behaviour that aren’t typical for the person and ask about them – but don’t add your own assumptions or opinions about why those changes may be happening. If you’re wrong, the person may be discouraged from continuing the conversation.

Examples of “noticing” conversation starters:

  • “I noticed that at times it looks like it’s hard to find common household items. Are you feeling ok? Have you noticed this happening more frequently?”
  • “Today it looked like it was hard to remember the day of the week or month. I noticed how frustrated you were. Do you want to talk about it?”
  • “You’ve been mentioning feeling like your moods are shifting a lot. This sounds difficult to experience. I would like to know more about what you are experiencing.”

Preparing for the response

Not all supportive conversations lead to an understanding of how you can help. Remember, the goal of a supportive conversation is to understand the individual’s needs and wants and whether they’re open to assistance. The guidelines below can help prepare you to respond when the person’s open or not to a discussion.

When the individual doesn’t appear open to discussion – a closed-door response:

Not everyone’s comfortable being asked how they feel or exploring reasons why they’re behaving differently. You might get avoidant responses, like “I’m fine” or “It’s none of your business.” If this happens, you can reiterate your concern and leave an opening for them to come back to you and share when they’re ready.

You could say:

  • “I was concerned about you and wanted to ask. If you say you’re okay, I’ll trust you. If that changes, I’m here to support you if you need me.”

If the supportive conversation ends here, you should feel good that you noticed and asked about their well-being. Try not to take the response or tone personally despite the conversation not going anywhere. The individual may not be ready to discuss the issue yet, but you’ve shown you care. It takes courage to initiate these types of conversations, and it’s not your responsibility to force another to notice or change their behaviour.

When the individual appears to be open to discussion – an open-door response:

If the person confirms they feel differently or that life circumstances have changed for them, you’ve opened the door to having a supportive conversation.

The next statement might be:

  • ”Tell me more. I want to better understand what you’re going through.”

Continue to follow the guidelines below for having a supportive conversation.

Continuing the conversation

Listen

Listen for where the individual feels unsupported or doesn’t feel their needs are being met. When they’re finished speaking, confirm what you heard by rephrasing it and asking if you understand correctly.

Examples of “listening” in the conversation include:

  • “I’m hearing you feel frustrated lately as you can’t often find certain items such as keys or your sunglasses.”
  • “It sounds like you are questioning your cognitive functioning as sometimes you find you can’t remember certain words or what day it is – is that what I am hearing you say?”
  • “You’ve shared that the other day you felt disorientated and didn’t know how to get home and that was scary for you – is that right?”

Highlight strengths

Mention and highlight strengths you see in the person. Some examples could be courage or persistence in dealing with the situation they just shared with you.

Here’s an example of “calling out strengths” in the conversation:

  • “I’m so glad you shared what you have been experiencing. It’s not easy to share when you feel different or are finding that your functioning in life has changed. It takes courage to be able to create awareness around this, and to be able to start addressing the changes you’re experiencing.”

Identify support

Identify what support the individual is open to and help connect them with relevant resources. Don’t insist they pursue support or resources they don’t want or aren’t ready to accept.

Examples of “identifying support” in the conversation include:

  • “You’ve identified the need to address the awareness around a change in your cognitive functioning, so how can I best support you at this time?”*
  • “I can support you with finding resources that might help to address this, or we can problem solve together on next steps – what would be helpful?”

*Note: If there’s a limit on how you can be supportive, be specific about how you can help. The offer of support needs to be realistic and in line with your own abilities and available time. Otherwise, talk about what’s realistic for both of you to do to create change in the other person’s life.

Create an action plan

Create an action plan with the individual to leverage their strengths and follow up on a regular basis, adding additional resources when they’re ready. Offer a clear timeline or understanding of how you’ll be supportive.

Here’s an example of “creating an action plan” in the conversation:

  • I’m so glad we had this conversation. You mentioned a few things you wanted to take action on. I’ll follow through with my offer of support in the next week.”

Thank you for being supportive! You’ve taken the time to learn to have a conversation that lets your loved one or friend know you notice and care about them. By showing concern, you can help them evaluate whether they should continue as is or address certain elements in their life. For some, this may be the beginning of a journey that will require the assistance of additional support services or professionals.

Additional resources

To be an effective supporter, it’s helpful to understand more of what your family member or friend is experiencing. Check out these resources to provide more context about their experiences:

For leaders trying to help employees, see:

Contributors include:Jessica GrassMary Ann BayntonWorkplace Strategies team 2022 to present

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