DAI Survey: Experiences Living with Dementia

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Please set aside about 10 to 15 minutes to complete the survey so you have enough time to share as much as you like about your experiences living with dementia.

If you like, please invite your care partner to join in helping you complete the survey.

The survey is easier to take on a laptop or tablet instead of a phone. If you take the survey on your laptop and need to step away, simply leave the window open and start where you left off to finish the survey.

Responses are only saved after you click the submit button at the end of the survey.
If you have questions or need assistance, please contact at info@infodai.org.

Which of the following best describes you? *

What is your name?

What is your email address?

Do you live alone or with a care partner? *

In what country do you reside? *

(e.g. United States, Canada, England, Ireland, Scotland, Australia, New Zealand, etc.)

Are you a member of DAI? *

What dementia diagnosis did you receive? *

(Check all that apply.)

My dementia was diagnosed as young-onset.

Alzheimer’s Disease

Frontotemporal Dementia (FTD)

Lewy Body Dementia

Parkinson's Disease Dementia

Posterior Cortical Atrophy (PCA)

Primary Progressive Aphasia (PPA)

Vascular Dementia

Mixed Dementia

Mild Cognitive Impairment (MCI)

Also, my diagnosis changed to another type of dementia after the initial diagnosis.

Other:

Required

What was your age when you were diagnosed? *

What year were you diagnosed? *

How long did it take you to get your diagnosis?

Less than 1 year from when I noticed something was wrong

1 year

2 years

3 years

4 years

5 years

More than 5 years

When you received your dementia diagnosis, did you experience any of the following?

(Check all that apply.)

I was told I should get my affairs in order.

I was told I would need full-time care in less than five years.

I was told I would not have long to live.

I was told there was nothing they could do for me.

I was told I could not live alone.

I was NOT given any hope for the future.

I was NOT offered cognitive therapy or rehabilitation.

I was NOT offered physical therapy or rehabilitation.

I was NOT offered any counseling or talk therapy.

My doctor did not tell me about my diagnosis, but instead told my care partner.

None of the above.

Other:

How did it make you feel when you received a dementia diagnosis?

(Check all that apply.)

Relieved to know what was wrong

Sad

Scared

Angry

Overwhelmed

Ashamed

Hopeless

Numb

Suicidal

None of the above.

Other:

Feel free to share more about any experiences (positive or negative) you had when you received your dementia diagnosis.

Were you told you would have to stop working?

Yes. I was told to stop working.

No. I was not told to stop working.

N/A -- I was not working at the time I was diagnosed.

Other:

Required

Did you continue to work after you received your dementia diagnosis?

Yes. I am still working.

Yes. I continued working after the diagnosis, BUT I have since stopped working.

No. I did not continue working after the diagnosis. I stopped working as instructed.

No. I had already stopped working before the diagnosis.

Other:

Required

Feel free to share more about your work experience or how you chose to stop working or if you were forced to stop working.

Were you told you would have to stop driving?

Yes. I was told I should stop driving.

No. I was not told to stop driving.

N/A -- I was not driving at the time I was diagnosed.

Other:

Required

Did you continue to drive after you received your dementia diagnosis?

Yes. I am still driving.

Yes. I continued driving after the diagnosis, BUT I have since stopped driving.

No. I did not continue driving after the diagnosis. I stopped driving as instructed.

No. I had already stopped driving before the diagnosis.

Other:

Required

Feel free to share more about your driving experiences or when you chose to stop driving or were told to stop driving.

Has a friend or family member ever said:

You don’t look like you have dementia?

Yes

Has someone out in public (even if you just met them) ever said:

You don’t look like you have dementia?

Yes

Has a healthcare professional ever said:

You don’t look like you have dementia?

(Doctor, nurse, technician, etc.)

Yes

Feel free to share more or tell us how it makes you feel when you are told you don't look like you have dementia.

Have you ever been told any of the following?

(Check all that apply.)

You are too young to have dementia.

You are functioning too well to have dementia.

If you have dementia, you should not be able to have an intelligent conversation.

If you have dementia, you should not be able to create a list of symptoms to discuss.

You would not be able to drive if you have dementia.

If you have dementia, your symptoms should have progressed more quickly.

If you had dementia, your memory would be worse.

None of the above.

Other:

Feel free to share more examples of what you have been told or how it makes you feel when people question your dementia diagnosis.

Do people ever avoid you or exclude you because you have dementia?

(Check all that apply.)

I have friends who have stopped calling just to say hi or have a chat.

I have family members who have stopped calling just to say hi or have a chat.

I have friends who no longer invite me to lunch or other social activities.

I have family members who no longer invite me to attend family gatherings.

Some people no longer ask me for help or don’t seem to think I can be helpful anymore.

None of the above.

Other:

Feel free to share more about how it makes you feel when you are avoided or excluded.

Have you ever been denied opportunities because you have dementia?

(Check all that apply.)

I have been told I was not allowed to volunteer because I have dementia.

I have been told I could not have a job because of my dementia.

I have been told that people with dementia should not drive.

I have been asked to leave a restaurant or store.

I have experienced being made to feel unwelcome or people acting uncomfortable with me, even if I was not out right told I could not participate.

None of the above.

Other:

Feel free to share more about being denied an opportunity to do something you wanted to do.

Do others ever speak to your care partner or someone else in the room, instead of speaking to you directly?

(For example, instead of asking you, they ask them: How is she doing? Is he having trouble sleeping?)

Often

Sometimes

Rarely

Never

Clear selection

When you do speak up, do people ever just ignore you?

Often

Sometimes

Rarely

Never

Clear selection

Do people ever accuse you of having an outburst just because you have a different opinion or disagree with something they said?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel like someone does not believe what you say just because you have dementia?

Often

Sometimes

Rarely

Never

Clear selection

Does it ever seem like your feelings do not matter? *

Often

Sometimes

Rarely

Never

Do you ever feel like your choices do not matter or your right to make your own choices is not respected?

Often

Sometimes

Rarely

Never

Clear selection

Do others ever make you feel like you are an inconvenience? *

Often

Sometimes

Rarely

Never

Do you ever feel like others think you are incapable?

Often

Sometimes

Rarely

Never

Clear selection

Do others ever make you feel like you are insignificant?

Often

Sometimes

Rarely

Never

Clear selection

Do others ever make you feel incompetent?

Often

Sometimes

Rarely

Never

Clear selection

Do others ever make you feel like your opinions no longer matter?

Often

Sometimes

Rarely

Never

Clear selection

Do people ever stop talking and get quiet when you walk in the room?

Often

Sometimes

Rarely

Never

Clear selection

Do your ever you feel like people do not consider what you are still capable of accomplishing? *

Often

Sometimes

Rarely

Never

Do you ever feel like other people are uncomfortable around you because they have their own fears about the possibility they might develop dementia? *

Often

Sometimes

Rarely

Never

Do you ever avoid telling someone that you have dementia because you are concerned about how they will respond?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever experience people being rude or impatient when you are out in public because you take too long to think through something?

e.g. deciding what product to buy, deciding what food to order, calculating a tip, counting change, stopping to decide which direction you want to walk, etc.

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel stigmatized because of your dementia?

Stigma can includes negative attitudes, stereotypes, and discrimination directed toward people with dementia due to myths and misconceptions.

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel like you are treated differently just because you have dementia?

Often

Sometimes

Rarely

Never

Clear selection

Feel free to share more about how you were treated differently and how people make you feel.

Do you ever feel alone or isolated?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel misunderstood?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel ashamed because you have dementia?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel you are being discriminated against because you have dementia?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever struggle with anxiety?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever struggle with depression?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever struggle with apathy?

(It's hard to get motivated sometimes to do the things I want to do.)

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel like you are not important to other people?

Often

Sometimes

Rarely

Never

Clear selection

Do you ever feel you are being dismissed without any consideration for what you can still do?

Often

Sometimes

Rarely

Never

Clear selection

Feel free to elaborate on the feelings you experience living with dementia or share techniques you use to cope with those feelings.

Have you experienced any of the following challenges?

(Check all that apply.)

Shopping in crowded stores is difficult to manage.

Dining in a noisy restaurant is difficult to manage.

Attending large social or family gatherings is difficult.

Following a movie or book plot can be difficult (I lose track of the characters or plot).

Navigating an airport is challenging or overwhelming.

Being on an airplane is challenging or overwhelming.

I have gotten lost while driving.

I have forgotten where I parked my car.

I have gotten lost walking in the neighborhood.

I have gotten lost inside of a store, mall or other public area.

None of the above.

Other:

Feel free to share more about any challenges you have experienced living with dementia.

What adaptive strategies (tips and tricks) for yourself have you implemented to help ensure more positive outcomes?

I set reminders on my phone or watch or Alexa type device.

I complete a task before I turn off a reminder alarm.

Before cooking, I set the stove timer to help remember to turn off the stove.

I use GPS when driving to avoid making a wrong turn.

I take a picture of where I park my car.

I try to put everything on a calendar so I can keep up with what I need to do.

I put up sticky notes as reminders.

I have a way to help me remember if I have taken my medication.

None of the above.

Other:

What healthy strategies or activities are a part of your routine?

I eat more fresh or frozen fruits or vegetables.

I include nuts in my diet.

I have added coconut oil to my diet.

I choose organic foods.

I avoid alcohol.

I meditate.

I try to get regular exercise even if that means just walking around the house more.

I try to socialize in person with others so I am not so isolated.

I join Zoom meetings to socialize with others.

I research topics related to dementia.

I engage in creative activities (e.g. art, crafts, music, singing, writing, etc.)

I play games, do puzzles, complete mind challenges, etc.

I look for things that bring me joy.

I take medication to help with anxiety or depression.

None of the above.

Other:

Feel free to share additional strategies or coping mechanisms you have to help you experience better outcomes.

I believe I am still capable of doing a lot of things.

Yes. Absolutely.

Yes. Most of the time.

Yes. Some of the Time.

No. Not At All.

Clear selection

I believe I am still competent and can make my own decisions.

Yes. Absolutely.

Yes. Most of the time.

Yes. Some of the Time.

No. Not Really.

Clear selection

I believe I still have a lot to offer.

Yes. Absolutely.

Yes. Most of the time.

Yes. Some of the Time.

No. Not Really.

Clear selection

I am still able to manage my own finances.

Yes. Absolutely.

Yes. Most of the time.

Yes. Some of the Time.

No. Not Really.

Clear selection

Have you experienced any of the following financial challenges?

(Check all that apply.)

I have forgotten to pay one or more of my bills before.

I have accidently paid the same bill twice in the same month.

I have had difficulty keeping up with my bank account properly due to math errors.

I have accidently over-drafted my bank account.

I have bought things I could not afford because I thought I had enough money.

I have donated money I could not afford to because I thought I had enough money.

I have given someone money simply because they asked.

Someone has talked me into giving them money.

Someone has taken money from me without my permission.

I have been taken advantage of financially by someone I know.

I no longer handle my own finances.

None of the above.

Other:

Feel free to share more about any financial challenges you have experienced.

Do you have a peer support group you can talk to regularly or just when needed?

(Check all that apply.)

I meet with a Dementia Alliance International (DAI) online peer support group.

I meet with one or more other online peer support groups.

I meet with an in-person peer support group in my community.

I meet with an in-person peer support group that is not in my community and I have to drive a long distance to attend.

There are NO in-person peer support groups in my community or anywhere close enough to drive.

I do not have a peer support group.

Other:

If you participate with other peer support groups or organizations, please share the names of the other dementia organizations or meeting opportunities.

Participating in a peer support group has helped me make new friends.

Agree