Caring for someone with dementia during the COVID-19 pandemic

The global outbreak of COVID-19 is creating concern in many families, especially those who are caring for and/or living with a parent who has dementia.  Here are some tips and strategies that can help, whether it is your parent or someone else you are caring for.

Talking to your parents with dementia about COVID-19

Less is more. Explain the current situation using simple and short sentences that can be repeated on a frequent basis rather than trying to describe the coronavirus and social distancing in detail. You can simply tell them that there is a flu going around and people are being asked to stay home.

Keep it Simple. You can write out the same message on a note. It is recommended to print clearly. Capitalize the first Letter of each word but avoid using uppercase LETTERS for the entire word. If you prefer typing a note, use a clear font like Arial preferably size 14. It can be helpful to prominently display the reminder note on the fridge or the main entrance door in line of sight. Should your mom or dad repeatedly ask the same question about the situation, direct them towards the written note for the information they need. “Dad, read the note on the fridge”.

Hand washing

Washing hands is more important than ever. Because short term memory is often affected, your family member may need reminders and cueing to remember to do this.

1. • Signs. Consider placing signs in the bathroom and elsewhere to remind the person to wash their hands with soap.
   • Show and tell. Some people have trouble anticipating or identifying the next step in a sequence, so it is best to give the person instructions one step at a time. Demonstrate thorough handwashing. You may want to start with: “Hey Dad, first let’s wet our hands under the water” etc. Continue with simple steps until the task is completed.
   • Go ahead and sing. Sing along with Mom or Dad using Happy Birthday (or the Alphabet Song) for 20 seconds to complete the hand washing task. Music is a neat way to engage with your parent. Check out this website. You can create 20 seconds worth of lyrics from a favourite song or artist. As a bonus, you can then download an accompanying hand washing poster featuring picture instructions and your chosen song lyrics.
   • Using the senses. Persons with dementia respond to sensory experiences. Another way to interact with Mom is to consider a manicure-spa. Set up a hand basin or bowl, add a gentle soap to the water. Encourage Mom to soak her hands. Comment on the comforting warmth of the water, sensation of slippery suds on the hands or the smell of the soap. Try a soap with a distinct fragrance such as lavender. Once soaking is completed, pat and dry hands. If desired, apply a hand cream to moisturize.
   • A sense of purpose. Ask them to help you out by requesting they wash their own drinking container in the sink after each use with soap and warm water.  This may be a more supportive approach than a repeated verbal reminder to wash their hands.
   • An alternative. Bring hand sanitizer to the person if they cannot get to a sink or easily wash their hands. Alcohol-based (with at least 60% alcohol) hand sanitizers can be a quick alternative to handwashing.

Dealing with restlessness or upset

If your parent is becoming restless or upset, ask yourself if  could they be inadvertently picking up on the daily COVID-19 TV news reports or perhaps even sensing some stress from you? Try this simple approach. Get your parent to join you in a breathing exercise. Sit together and slowly inhale through your nose then exhale through your mouth for five deep breaths. You can both reap the benefits from this short calming activity.

A person with dementia commonly experiences changes in the brain over a long period of time. During the COVID-19 pandemic, stay alert to sudden cognitive and/or sudden behavioural changes in your parent; these changes may occur over a few hours or few days. It may be easy to miss (or possibly dismiss) the onset of these changes presuming it’s just the dementia progressively getting worse. Not necessarily so. The sudden cognitive/behavioural changes may be symptoms of another underlying cause. Seek advice and confer with your health care provider regarding the sudden changes. Other alternatives for consideration are calling your provincial telehealth line or accessing a virtual medical service.

Caring for you, the caregiver:

Social distancing can be distressing if you are no longer able to get respite from say, your local adult day centre, homecare workers or other family members. Here are a few things you can do for yourself:

• Mini respite moments. Try carving time out for yourself by creating  your own retreat space while at home. This may be in the form of a short daily walk, sipping a cup of tea or coffee, or simply using your bathroom as a momentary oasis to re-energize and gather your thoughts.
• Concert just for you. Catch your favourite performing artist or group for free. Many are posting and hosting concerts online for those who are self-isolating.Stay connected through social media networks.
• Face time. Chat live and in real time with siblings and close friends.
• Neighbourhood initiatives. Participate in a neighbourhood circle of care on your block. Several community neighbourhoods are launching for example, private Facebook group pages. They are encouraging and inviting neighbours to join in through flyers left at front doors, notices on mailboxes, even postings on bulletin boards at local grocery or pharmacy stores. These social pages are used to check in on neighbours and see if anyone needs necessities or support. Updates are posted regularly.
• A lifeline. Consider joining a private online caregiver group . Use your computer search engine to find a group specific to your needs such as Adult Children of Parents with Early-Onset, Dementia Support for Dementia & Alzheimer’s Caregivers, Lewy Bodies Carers group, Frontotemporal Dementia (FTD) Support Group Frontotemporal Dementia (FTD) Durham Support Groupetc . In the isolating experience of social distancing, especially for caregivers, this constant connectivity is a lifeline.

In what way(s) have you supported someone with dementia during the COVID-19 pandemic?