Sheltering-in-place is particularly challenging for caregivers who relied on day programs and in-home caregivers to provide routine as well as caregiving assistance and respite. Many day programs are now closed, and some families are choosing not to have in-home care services until the shelter-in-place order is lifted. In addition, caregivers with family members living in care facilities are not permitted to visit and, in some cases, cannot even send or deliver food or other items. So, how to keep our loved one busy or connect with them until things get back to normal?
Home Instead Senior Living is hosting a chat series on “Caregiving During Covid-19” on Facebook Live. The fourth in the series was on April 9, 2020. Gerontologist Lakelyn Hogan spoke with David Troxel, an expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care.” Ms. Hogan and Mr. Troxel discussed this challenging caregiving situation. They believe that caregivers may find respite in taking a new approach to activities with your loved one.
Though the focus was dementia caregiving, this approach is applicable to all caregiving situations — not necessarily those who are caring for someone with dementia.
Ms. Hogan and Mr. Troxel argue that to provide person-centered care during shelter-in-place means taking the time to gather your thoughts and information about the person you are caring for before you suggest activities to do with them. Personalize those activities so they have to meaning or interest to your family member, based on the life your family member has led. Consider:
- What sort of personality do they have (shy or outgoing)?
- What type of career did they have (and did they love it)?
- What hobbies did, or do they enjoy (make a list!)?
- Write down 10 things about the person you care for.
Brain Support Network staff member Denise Dagan took notes during the conversation, and shares those notes below. The question-and-answer portion of the event was focused on dementia caregiving scenarios.
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Dementia Care in the Time of Social Distancing, A Live Chat with David Troxel
Facebook Live, hosted by Home Instead Senior Living
April 9, 2020
Notes by Denise Dagan, Brain Support Network
Moderator: Lakelyn Hogan, gerontologist
Guest: David Troxel, expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care”
Lakelyn – Does having dementia increase the risk of contracting covid-19?
David – No, but dementia doesn’t travel alone. Most people with dementia are elderly and have co-existing conditions, which can make them more fragile and make covid-19 a more severe illness, if contracted.
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Lakelyn – It is difficult to keep someone with dementia safe from covid-19 because they aren’t able to remember about social distancing, washing their hands, etc.
David – People with dementia need cueing. Caregivers should not just remind someone with dementia to wash hands, etc. but wash hands with them or provide hand sanitizer, etc. If you are living with someone who has dementia you don’t need to stay 6′ from them. It is more challenging being a caregiver during the shelter in place order because day programs are closed and you may not be having in-home care come into your home at this time.
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Lakelyn – Person-centered care is so important for those with dementia, especially now. Can we talk a little about what person-centered care means?
David – There is no medicine that improves dementia symptoms much. It has been more than a decade since a new medication has been approved for Alzheimer’s. Person-centered care is listening, communicating, doing activities together. reminiscing, etc.
“People don’t remember what you said or did, but they always remember how you made them feel.” – Maya Angelou
If you are challenged by being your loved one’s sole caregiver, now is the time to look online and learn tips and tricks for how to provide person-centered care.
Person-centered care is really tailoring every moment toward creating meaningful engagement with someone who has dementia.
There should also be ritual in your day. One woman I spoke with recently has added a daily happy hour for herself and her husband.
I want to talk a little about keeping the news on all day. This is not the time for that. It increases everyone’s anxiety. Even if the person with dementia doesn’t understand what’s going on with the quarantine, they do pick up on your anxiety. Put positive things on TV. Consider using headphones when you listen to or watch the news.
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Lakelyn – What have you heard people doing to cope with this quarantine period?
David – To incorporate person-centered care, start with the person’s life story. That will inspire you as to which activities to do with your loved one. Maybe write a ‘top 10′ card with things about your loved one, sort of a mini-memoir, to help you think of things to do with them.
Go through old boxes (cleaning out) with your loved one, is a great way to reminisce and be productive.
Take pictures of things you won’t keep and put them in an album by category (former residences, vacation souveniers, etc.)
Write letters of appreciation together for community services and businesses.
Share or play music together for an hour every day.
If your family member is in a facility, make sure they have access to a personal music source in their room.
Develop a new daily ritual like afternoon tea or happy hour.
Maybe engage some old memories or former places your loved one used to live into your rituals or reminiscences.
Look up places online where they used to live
Stream museums they have been to – or wish they had visited
Stream opera or other performances that connect with their history.
Get out in nature for some vitamin D, exercise – even if you can’t walk, sit on the patio and soak in some sun.
If your family member is in a facility, ask caregivers to be sure to get your family member outside.
Maybe do Facetime with them, even while they are out for a stroll.
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Lakelyn – Caregivers have some fear now about their health and their loved one’s health. A recent survey showed:
– nearly 3/4 of dementia caregivers were unsure what would happen if they were unable to care, and
– 2/3 didn’t know what to do if their loved one became ill.
David – Statistically, caregivers are more likely to become ill and/or die before the person they are caring for. Everyone should have a Plan B. Fortunately, dementia is a slow moving illness, so caregivers do have time to investigate who would step in if you become ill. Now is the time to put some thought into this, especially if your family member is in a facility and you are unable to visit. You probably have the time to make a Plan B, now. Socialization is the best treatment for dementia, depression, etc. and asking others is a good place to start your investigation into what others are doing for a Plan B. So get out there and talk with people about stepping into your shoes, if you should become ill.
If you are not already, make use of day programs or place your loved one in a facility to relieve your caregiver burden is sometimes the best thing you can do for your loved one. Caring for your own health means you can look after your loved one longer.
Remember, the Alzheimer’s Association has a Helpline available 24/7. You can call them to relieve stress as a caregiver and ask them to give you a start on your Plan B.
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Lakelyn – How about some more suggestions for engaging with your loved one at home?
David – If you do not live with your loved one who has dementia you can visit 6′ apart. You will have to explain and remind about the quarantine. Most care facilities will not permit visiting at this time. Pretty much everything we do together can be adapted by using technology, particularly Zoom, WhatsApp, Skype, Facetime, Webex, etc.
Read aloud, share family news, have a chat
Ask your loved one’s opinion about whether to keep or toss items in a wardrobe, closet or attic
Share music and/or sing together
Do yoga, tai chi, or other exercise/meditation
Play games (blackjack, Yahtzee, Monopoly, Clue, etc.)
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Lakelyn – Technology is huge right now. I came across an article about using apps with people who have dementia. It categorized apps for different uses. I love Grandpad.
[Lakelyn didn’t provide a link to the article she mentioned, but I found an article online which categorizes “25 Useful Apps for Dementia Patients and Carers,” at: uksmobility.co.uk/blog/2016/07/25-useful-apps-for-dementia-patients-and-carers/]Low-tech socialization, like drive-by visits with cheers and music to greet family members whom you cannot get physically close to.
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David – Self care looks different for everyone, but all caregivers need to find out what respite they can do for themselves now. These are the proven methods for reducing stress:
Get outside
Read
Meditate – Doesn’t have to be formal, just sit in the garden for 5 minutes and breathe
Connect with old friends or family (cards/letters, phone, video chat, email, text, in person 6’ apart)
If you’ve had difficult relationships with family members, or a row with a friend, consider forgiveness
Sometimes, when someone develops dementia, they have forgotten the bad history and you can reconnect without that baggage in the way – at least from their perspective
Laughter (any source: sitcoms, internet memes)
If you have been disconnected from caregiving for someone in your family, consider getting more involved when the shelter-in-place is lifted. Connect with that person’s primary care partner now to work out the place where what they would find helpful overlaps with what you are able/willing to do to help.
Appreciate those who are still doing hands-on caregiving, whether it be family, in-home carers or facility staff.
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Q&A
Q: Mom temporarily living with daughter and has sundowning, is swearing and upset.
A: Google ‘sundowning’ for some tips. When you have dementia, your day is exhausting. Plan for a late afternoon snack, ice cream, tea party, easy activity/craft do distract your Mom. Turn on lights to prevent shadows. Declutter your home. Encourage a short afternoon nap.
Q: As a caregiver, I want to wear masks and gloves but feel it may cause fear in someone with dementia.
A: Stand 6′ away and reveal your face while you introduce yourself, put it back on before you move closer. Explain that the doctor wants you to wear PPE because of the quarantine.
Q: How do I help my loved one to understand what’s going on with the quarantine and why we can’t get physically close?
A: Everyone with dementia is different. Some will understand, others won’t. Some will remember for awhile, others won’t. Wear PPE and explain why you aren’t hugging, etc.
If you live with a senior or other person who is at risk for serious illness if infected with covid-19, you can designate a ‘sterile’ zone in your home where visitors must where mask and gloves or wash up before entering. This can work especially well if you have two bathrooms in your home and a bedroom and/or sitting area for the at-risk person.
Q: What to do when you have a loved one in a facility and you can’t visit. Some facilities are so strict, you can’t even send in things.
A: Ask the facility to make Facetime, WhatsApp, Zoom, etc. opportunities available. This doesn’t always work well. Consider an old fashioned phone call. Drop off favorite foods or care packages, if it is permitted. People with dementia are more resilient than we give them credit for, especially if they have short term memory loss and don’t realize it has been weeks since they’ve seen you.
Q: How to find online sessions to engage Mom in conversation or music?
A: YouTube has a bunch to watch. Grandpad is a good tool to use with seniors. There are a bunch of free concerts, plays, museum tours, zoo cams, etc. Invite your Mom to dress up and attend an ‘evening’ concert, then connect with Facetime and cue up something online. Take a ‘vacation’ by Googling scenes from Hawaii, or elsewhere. Create a restaurant in your home (print a menu, dress up, add light music, flower or candle on the table, etc.)
Q: Dad has no hobbies and can’t get around well. Family struggles to engage with him.
A: Apathy can be a symptom of dementia. If your father had always been more engaged in life, ask his doctor about depression. Tell him you need exercise so please toss ball with me. Easter Sunday service online, please join me. Cat or dog visit or brushing. Spilled poker chips, please put them back in the tray by color. “30 Things To Do in 30 Seconds or Less” is a chapter from David’s book. The list is available online at: bestfriendsapproach.com/wp-content/uploads/2017/02/30-Activities.pdf. Hand massage, opinion about clothes, wrapping gifts, going through catalogs to shop for a birthday.