Frequently Asked Questions

Is dementia hereditary?

The research criteria show that hereditary or familial dementia is generally related to those who have been diagnosed with dementia under the age of 65 years old – Young Onset.  Research indicates that the percentage is about a 5% chance that dementia might be passed down to the children in the family. 

A very small percentage of dementia is hereditary, usually Young Onset (diagnosed under age 65).  There can, however, be risk factors (diabetes, obesity, diet, etc.) that may be common among family members.  

How can I visit with someone who doesn’t know who I am?

This is in your approach to the person who may not be able to say your name.  The person will recognize the tone of your voice and your touch, and this tells the person living with dementia you belong to them.  You can introduce yourself by saying, “Hi Mom, it’s Lorraine” followed by a smile and wait for a response. You can also introduce yourself by including how you are related to the person you are visiting. “Hi my name is Lorraine, I am your daughter”.  

This response may be through body language, for example smiling eyes, or a smile.  They may even address you as being one of their siblings or an auntie and you can just go with it. Knowing what the person liked, the smell of flowers, the smell of baking, pictures of something they valued, reading a book or the newspaper to them, playing music they loved and singing with or for them, holding their hand and gently rubbing their hands with lotion.  Taking the person for a walk through the building and stopping to look out the window and talk about what you are seeing and giving the person a chance to respond as well. 

A person may not be able to identify you by name or by relationship, but can still enjoy your company. Connect with the person based on their interests – music, art, sports, pets, gardening, etc. Consider an activity that fits with their interests and long-term memory – bring towels to fold, a cookbook with pictures to go through and talk about, a photo album or “coffee table” book with pictures of something that interests them or relates to past activities, their favorite music to listen to/sing along with. Make generic statements: “No snow on the ground”  or “It’s sunny today” and follow the person’s response.   If the person does not recognize you they may be hesitant about touching or walking with you; be aware of their responses and comfort level and respect boundaries.  

What are some tips and tricks I can use to help my spouse living with dementia as he experiences hallucinations and delusions?  

To be in the moment with the person living with dementia who is experiencing hallucinations.  Ask them what they see and acknowledge whatever they see as being there.  If the person is upset, let them know you will deal with it for them – which may even be you acting out that you are letting those persons know they are not welcome and to not come back.  Or, if it is not bothering them, you can ask the person living with dementia what the people or animals are doing and just talk them through the hallucination. Delusional thinking is believing what they think they see is true.  Unless it is a safety issue, step back and think about it – you know what is correct, and correcting is not the place to go with a person living with dementia. The delusional thought may also be them trying to express some other need. 

Remember that the hallucination or delusion is real to them, so do not argue or correct.  Respond from the place of accepting their reality. Have them talk about what they are seeing if it’s not disturbing to them.

You may be able to gently steer the conversation ie:  are they seeing animals? Ask what kind, and what they're doing, then talk about pets they had growing up or animals on the farm, if applicable. If a hallucination is upsetting or distressing, provide reassurance “Oh, that’s the kids’ friends in the basement, I’ll tell them to quiet down”. I’ll go tell that guy to get out of our yard and never come back!”   Sometimes light and shadow can contribute to hallucinations – see if making sure the room is well-lit can lessen the hallucinations.  

You can employ the same response for a delusion – never lose sight of the fact that it is real for them, and respond with that understanding. If the delusion is not upsetting, try to distract or change the focus. If the delusion is upsetting, offer reassurance that you (or someone appropriate) will look into it or deal with it and try to redirect it.

Do not argue, do not try to reason, and remember that you may have to employ these strategies repeatedly if they experience ongoing hallucinations or delusions.  

My husband (care partner) answers before I get a chance as it takes me longer to answer a question now. How do I get him to understand that I have the answer, I just need more time.

If there are adult children or close friends, have one of them talk with the care partner about this, to help the spouse understand they can still contribute an answer and they need to be patient. Ideally, the spouse would benefit by having someone encourage them to seek out support and education from the Alzheimer Society. 

If you are not already connected to the Alzheimer Society, please reach out directly at 1-866-590-5465 or help@alzheimer.ab.ca or have your doctor make a referral to the First Link Program. We would encourage both you and your husband to attend a First Link Connection information session that can help him understand why you need more time to answer. We would also encourage you to tell your spouse how you feel and involve an adult child or other person close to you for support during that conversation if that would be helpful.  

When home care comes, there is always someone different; how can I let them know what to do with my spouse?

Make sure the home care plan is easily accessible, you can print it off as an extra-large print copy to hang in the bathroom or bedroom. 

New care workers need a connection to the person living with dementia. Having a short, simple history will give the worker something to connect.

Have a list of activities/tasks posted somewhere easily accessible to the staff coming in.  Have some personal information available on this list – preferred name, likes, dislikes, past job, interests, hobbies, likes, dislikes.  Note how your spouse expresses he’s happy or unhappy.   Let the staff person know what things are soothing to him if he becomes distressed (music, photos, sitting by the window, etc) and have any materials accessible/ready to go if needed.  

My spouse follows me around and won't do anything on his own, how can I get him to do something?  

Your spouse’s dementia may be preventing him from knowing how to initiate any task or activity.  He may be following you around because he feels safe when you are nearby.  You may be able to have him involved in an activity near you – folding towels while you load the dishwasher, for example. Your husband may need cueing and to be shown what is expected, as his brain may not be able to recall all the steps in a task anymore. 

You can also try to sit with him and start an activity (that he would enjoy or fits his interests) and invite him to participate.  If he engages, you can then try to ease away for a short period, and try to increase your time away from the activity (getting a glass of water, be right back. Boiling the kettle for tea, be right back. Going to the bathroom, be right back).   

It is important to return to him when you say you will and you may need to support him to reengage. It will take him longer to do things, as his brain is working differently. Activities also need to be modified for his changed abilities; they should be easy enough that he will be successful and not frustrated but challenging enough that he feels engaged. You may need to plan for multiple activities as his attention span may not be as long as it used to be. It is also important to remember that his abilities have changed and so things won’t be done in the same way they used to be – do not expect perfection..  

My spouse won't go to any programs that are offered. I need a break. What can I do?  

It would be helpful to understand why your spouse is not wanting to go to programs – perhaps what is offered is not interesting to them. It may be helpful to speak with your case manager to see if another program may be a better fit, or if activities can be offered that would be a better fit for your spouse’s interests.  For some people, the approach makes a difference – so they may be open to attending a program if they’re “volunteering” there, or if they believe they've got a part-time job with the program.

Alternatives to this, that will give you a break, could be enlisting the help of family and friends – could someone commit to visiting with your spouse for a few hours once/a week or a couple of times per month? They may be more comfortable with someone they know. You can connect with your case manager to explore the Self Managed Care option; some care partners find this works well to hire a companion to spend time with their family member in order to get a break. The cost of this is covered by AHS.  Some care partners look into hiring a private companion, which they pay for fully out of pocket.   Some agencies provide this service, or sometimes families hire someone who is known to them.