Over the last few years, our family has had the great honor of being caregivers for a family member with dementia. My husband’s grandmother had dementia. When she moved into a memory care facility near us, we had the privilege of investing much of our life into her. We have learned a great deal in the last few years. I want to share some dementia care tips and helps in hopes of making this journey easier for you.
Dementia Care Tips and Helps
** Important **
My husband’s grandmother (Mum) passed away in August of 2020. Losing her has been hard on us and one of the hardest parts is definitely figuring out what you do as a caregiver when the person is no longer with you to care for. We learned so much from her and I’ll tell you, I would give the world to have the same conversation every three minutes with her for an hour.
Index of Dementia Questions and Answers
How do I handle the dementia loops?
How do I choose the right nursing home?
What happens when a person with dementia gets stuck in a half-truth or mistruth?
What are some of the struggles with dementia?
Who can help with dementia care?
How do I talk to my kids about dementia?
10 Dementia Care Comfort Methods We Took
How do I handle the dementia loops?
Dementia can be very difficult because people with dementia get trapped in what we often call a loop. A loop is a series of the same questions asked, again and again, every few minutes or more frequently as the disease progresses. These loops can become very frustrating for caregivers who are tired of answering all of the same questions on repeat. However, these loops are a big part of dementia and it is important to have a plan for the loops.
Tips for handling dementia loops
- Answer the questions. – It can be tempting to try to change the subject. While this may bring you peace, it won’t bring peace to the person you are talking to. It is much more helpful when dealing with a loop to answer the questions.
- Print a list of answers. – Many of the loops will be predictable and offer the same questions consistently. If the person you are caring for is able to read it can help to make a list of answers. When they ask, direct them to a laminated list of answers they can read to answer their questions. This can give you a break.
- Keep it simple. – You will be answering these questions again sooner than later. Because of this, make sure you are keeping your answers simple. As dementia progresses, the focus of the person on the answer may not last as long.
How do I choose the right nursing home?
Sadly, one of the big things that come with dementia is a need to put family members in a nursing home or bring extended care into the home. It is quite a bit for anyone to take on twenty-four hours a day. Not only are you dealing with their memory needs, but you are also dealing with medical, social, and other needs as well. Working with a nursing home can bring back your joy and give you peace that your family member is being cared for.
Tips for choosing a dementia nursing home
- Ask about their memory care unit. – When looking at a nursing home, make sure to ask many questions about their memory care unit. You want to know that they have the capability to handle memory care.
- Ask about medical care and nursing care options. – As dementia progresses, you may find that the person with dementia you care for has less interest in leaving the facility. Having a facility that can bring medical care into the person with dementia so that they don’t have to go out will be a game-changer.
- Ask about safety protocols. – When you have a person with dementia going into a facility you want to spend some time discussing safety protocols for protecting them. It is important that it is a locked unit so that they can not get outside at any time of day without supervision. It can also help to ask how medications, cleaning supplies, and other items can be kept out of reach for the person with dementia.
What happens when someone with dementia gets stuck in a half-truth or mistruth?
Sometimes people with dementia get stuck on a loop of information that isn’t true. This could be a timeline issue where they feel they are in the wrong timeframe or a situation where they remember things happening differently or where they forget something is going to happen. People with dementia can have a hard time placing themselves at the correct time or knowing the day they are on.
Tips for helping someone with dementia who lives in a mistruth
- Go with their story. – For some items, it is important to go with the story that works for them. With the person we cared for, she genuinely believed her mom was still living. If we contradicted that, it would severely upset her. For her, the kindest thing to do was to accept that in her world her mom was living. Sometimes going with the story they believe can be the kindest thing you can do.
- Correct when it’s kind. – There are times when it is kind to correct a misunderstanding. My husband’s grandmother often mistook her daughter for her friend in conversation. We would often remind her that she was her daughter and help her to remember her daughter in relation to her. If it is kind and if it helps them to have joy, correct them. Some corrections can bring them great joy.
- Find ways to manage your disappointment. – Sometimes the things that a person with dementia believes to be true can be very disappointing. It is important to remember that this is not intentional. Find ways to cope with some of the disappointment that comes with these mistruths. They are not trying to hurt you and may not realize that this does hurt you.
What are some of the struggles with dementia?
After 3 years of dementia care, we experienced some of the hard moments that are often part of this experience. While so much of it can be amazing and give you the chance to show love, there are some struggles to keep in mind. I don’t tell you about these to worry you. I simply think it helps to know that these things could happen so you can prepare.
Struggles you can find with dementia
- UTI’s can be very significant. – We noticed a lot as caregivers and speaking with the nurses that UTI’s can have huge impacts on the health of a person with dementia. If you notice an increase in depression or anxiety, it might be wise to ask the nurse to do a urinalysis to be sure a UTI is not to blame.
- They might refuse to eat or drink. – As dementia progresses, you may start to see your loved one reject food or drink. This will happen more as you get closer to the end. Try to offer foods and drinks that your loved one can enjoy. Keep in mind that they may have a harder time chewing so you may need to move to a softer food option.
- There will be HARD days. – Not all of dementia care is easy. There are some really heavy hard days. Days when you are in the hospital with them because the nurses can’t do it. Days when they are angry at you for not visiting when you’ve been there often. Days when they don’t remember who you are to them or don’t feel like talking at all. These hard days will come. Find support and someone who can stand by you in this. Don’t try to do dementia care alone.
Who can help with dementia care?
Dementia care can be very draining for those who are caretakers. Much of the time you will feel like you don’t have all the answers. In fact, it often feels like it is a constant transition from one experience or struggle to the next. During these times, it can be tempting to ask for help with all the many things you have to do as part of dementia care. Here are some of the resources we are big fans of.
Resources for dementia caregivers
- Vitas Healthcare – Vitas healthcare offers hospice, palliative care, and end of life care. We couldn’t have survived without them! They were in charge of so much that helped us out. They handled medicines, medical testing, and end of life care. They were our backbone towards the end of Mum’s life and I can’t say enough about how much we appreciated them!
- Alzheimer’s Association Hotline – This is a 24/7 hotline for caregivers to ask some questions or speak to qualified people about their situation. While I did not use this resource, it’s one that might have been a great help to us.
- Friends/Fellow Caregivers – Fellow caregivers or former caregivers are a wealth of information. Don’t be afraid to join support groups or reach out to fellow caregivers with questions. That help can be a game-changer when adjusting to all of the changes.
How do I talk to my kids about dementia?
When you are a parent who is also a dementia caregiver, you can walk a very interesting line. Not only will you be fulfilling the role of caring for someone with dementia, but you will also be caring for your children. These tips are written with the understanding that you are talking to younger children instead of adult children. Many parents are finding themselves stepping up to care for grandparents or seeing their parents diagnosed with dementia while their children are young. Here are a few tips to help talk to kids about dementia.
Tips for talking about Dementia with Kids
- Help them be memory keepers. – Children will be confused by the experience of dementia. Many people with dementia start to lose memories and will go on loops asking the same questions repeatedly. When talking to kids, it can help to teach them to be memory keepers for the person with dementia. This might mean teaching them which answers they are able to give to help the person with dementia remember things. It can help to feel like they have a job when visiting.
- Teach them to stay consistent. – When a person has dementia, they don’t always know that what they see as truth isn’t the truth. This could be because they are mentally somewhere else or because they have forgotten. Staying true to the story they are telling can make a world of difference. Teach kids to stay consistent to the stories that make sense to the person with dementia.
- Remind them that they are still loved. – When dealing with dementia, loved ones can forget the name of children. However, they will not easily forget the emotions affiliated with them. It can help to remind children that though it feels like that person doesn’t remember them anymore, they do still love them.
- Keep visits short. – Children might struggle to handle long visits with a family member with dementia. Caring for someone with dementia takes a lot of you and it can be very draining for children. They may not understand enough to find joy in long visits. Keep visits that include children shorter or let them communicate when they are worn out with the experience.
10 Dementia Care Comfort Methods We Took
- Names on Photos – One of the ways we helped bring some comfort to Mum is to add names on the photos. We had photos printed with people’s names to help her remember.
- Laminated Answers – We laminated answers to her most common questions so she could refer to the sheet whenever she was anxious.
- Joy For All Companion Pets – One of Mum’s greatest joys were her companion pets. She had a cat and a dog. They brought her the joy of having a pet without having to take care of them in a traditional way.
- Keep things consistent – When we moved her to the nursing home, we duplicated her room as closely as possible to her room at home. It’s important to keep consistency where possible.
- Keep favorite foods and drinks around. – When we noticed a decrease in food/drinking we made sure to keep food and drinks that she loved around so that she would try to eat them.
- Popsicles can help keep hydration up. – Using items like popsicles and jello as a way to keep a dementia patient hydrated can be a huge help when they start to deny drinks.
- Play familiar music. – Music can be a great calming force for many people. Using music they have loved can be a great way to bring some peace.
- Remind them of what they know. – Towards the end of dementia, it can become easier to call themselves stupid or dumb. This is because they don’t know why they don’t remember things. Take some time to ask questions you know they know how to answer in order to rebuild their confidence.
- Have friends/family visit. – One of the ways we helped bring comfort was to have other friends and family come in and visit. Sometimes that variety can bring great peace.
- Keep their mind engaged. – Sometimes talking about things like an old recipe or the ability to recall a birthday or how to add numbers. These moments to keep engagement up can help their memory and their overall avoidance of more difficult days.
