Social isolation is currently the best weapon we have against the spread of COVID-19. By staying home and avoiding interactions with other people, we minimize the spread of this virus in the hopes of “flattening the curve” of new infections and, ultimately, fatalities. But for people living with dementia, increased isolation can lead to strong feelings of insecurity, sleep problems, anxiety, aggression, agitation, and even hostility.
When it comes to crisis situations, all people have different psychological responses to different situations. People with dementia who have been diagnosed with coronavirus and are hospitalized will be impacted differently than people who are not sick but who may live alone at home, with family or in an assisted living or memory care environment.
What kinds of challenges might you expect to encounter as a care partner or care provider, especially over the next few weeks?
Irrational Analysis & Response
Perhaps you’re noticing that your loved one is responding irrationally to the coronavirus outbreak. Maybe they are completely panicked or seem to be totally unconcerned with the whole thing. Either way, it could be directly opposite of how you feel about the situation and this can lead to excessive stress and tension in the relationship and in the home environment. Irrational analysis and response can lead to anxiety, eventually resulting in more difficulty sleeping and increased irritability.
Change in Home Care Arrangement
Regular caregivers might get sick or need to be home with their families, resulting in new faces and unwanted changes in the midst of an already stressful situation for your loved one. New care providers - especially if not allowed a sufficient period of time for handover and break-in - might feel anxious and uncertain when taking over new responsibilities and new clients. This transfers to the person with dementia and escalates their own feelings of anxiety, causing their mood to become more unstable. You might notice that they are more irritable or aggressive than usual.
Unstructured & Unscheduled Time
Being at home all the time without a regular schedule and planned activities leads to boredom and sleep disturbances, especially if they’re taking more naps that usual. Your loved one might start wandering aimlessly around the house and might experience more anxiety if they don’t have meaningful activities to engage in on a regular basis.
Declining Memory & Comprehension
Because of their acquired cognitive disabilities due to dementia, your loved one may be experiencing declining memory and comprehension. This can result in poor understanding of and compliance with proper infection controls. They may be unwilling to cooperate with care and at times, might be in direct conflict with care partners and provides.
Increased stress, change, and uncertainty associated with social distancing and ramifications of the coronavirus pandemic may cause their cognitive abilities to deteriorate more rapidly. You may notice their cognitive impairments and memory loss become more prominent as the days and weeks of isolation and changed routines progress. Their daily life may become more and more disorganized.
All of this can be very stressful for family carers. You might be more anxious or worried about your loved one than you usually are. Sometimes you might even feel agitated or angry towards them and at times may find yourself frequently in conflict with them. Home care workers and other care professionals are not immune to this stress. They too feel more anxiety and confusion, panic, irritability, fatigue, and burnout. They too feel lonely and helpless at times.
How can you help your loved one or your patients and, in turn, help yourself?
Psychological First Aid
When someone gets sick or needs to be hospitalized, carers and health care professionals must assess the person's most urgent needs and concerns, while trying to meet their basic needs. Beyond those basic needs, work to provide comfort and a sense of security…even in the midst of chaos and uncertainty. Remember that people with dementia – like all people – like to be listened to. Listening to them is more useful and effective than trying to persuade them.
This is especially helpful for people living with mild cognitive impairment, or mild to moderate dementia. Encourage them to get their information on the coronavirus pandemic from reputable, authoritative sources and to avoid media noise. Suggest and offer memory aids to enhance their own information gathering, such as notebooks to write down notes from the news that think is important or they want to remember for later.
Have a positive attitude when reminding or encouraging them to take the necessary health and safety precautions. Your attitude rubs off on them, so if you’re barking orders at them, you shouldn’t expect them to respond positively. Play up the benefits of these protocols and procedures, focusing on what you and they are getting out of the deal rather than what you are losing.
When it comes to getting them to comply with infection control and protective measures, recognize that their behaviors and responses are rational in their own mind. Take a step back and discuss the reasons behind the protocols and offer to provide practical help and assistance. Break down complex tasks into simple steps and guide them one at a time. Make memory aids like words and pictures to help them remember what to do and in what order to do it.
And perhaps most importantly, work to cultivate a sense of accomplishment. Celebrating their successes helps encourage their independence and secures their dignity, which makes life easier for everyone.
Encourage your loved one to seek support and connection with family and friends through phone calls, video chat, WhatsApp, etcetera. Zoom is my favorite video chat platform to use, largely because it's so easy for older people to use, even those with acquired cognitive disabilities. Connecting with other people is important because each of us needs to be able to express our concerns in a supportive and non-judgmental environment.
If your loved one is not yet a member of Dementia Alliance International, help them sign up. DAI provides free online support groups exclusively for people living with dementia and the global community they have built is – in a word – life-changing.
Stay Calm & Carry On
Help them discover new relaxation or mindfulness exercises to help reduce their stress. And encourage them to enrich their home life within the confines of physical isolation. This could be as simple as taking some free online cooking or art classes.
As always, it is important to validate your loved one's emotional experiences. The easiest way to do this is simply by listening to them and giving cues that make it clear they’re being heard. Turn your body towards them, make eye contact, and say things like “Okay” or “I see”. Combined with simple, clear communication and a positive attitude, emotional validation can do wonders for the lived experience of your loved one during this stressful experience. We all want to know that we’re not alone.
Social distancing is currently the best weapon we have against the spread of COVID-19. Since it is a novel virus – meaning that it has never before been seen in humans – we have zero natural immunity against it. By staying home and avoiding interactions with other people, we minimize the spread of this virus in the hopes of “flattening the curve” of new infections and, ultimately, fatalities.
But for people living with dementia, increased isolation can lead to strong feelings of insecurity, sleep problems, anxiety, aggression, agitation, and even hostility. Right now, social isolation is so important for our physical health but is not so good for our mental and emotional wellbeing.
If you are caring for someone with Alzheimer’s or another form of dementia right now, I hope you’ve learned a few things that will help alleviate some of the challenges you might be facing today and throughout the course of this epidemic.
Thanks to Dr. Huali Wang and Alzheimer’s Disease International for sharing the lessons learned from the COVID-19 outbreak in China. Here is a link to the full presentation if you are interested in learning more. It is especially useful for medical and care professionals who may be caring for COVID-19 patients living with a diagnosis of dementia.
As always, be well and remember…every journey has purpose.
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