Life after lockdown: Adjusting to the 'new normal' for a person with dementia

Some people experience anxiety or low moods because of coronavirus restrictions. Andy, who has young-onset dementia, shares how shielding during lockdowns has affected him. Find out what carers can do to help support their loved ones with dementia when restrictions change.

Andy's story

I have early onset dementia and like everyone else, I’ve been in a lockdown, or partial lockdown, with all of its advice, rules and regulations for nearly a year now. In addition to all this, I’ve been shielding due to other underlying medical conditions.  

Before the pandemic, my days have always been filled with meeting people. There was nothing I liked more than a few hours in a coffee shop, pub, or friend's house in the afternoon just chatting or looking around the shops (usually a DIY store).

I also really enjoyed being able to talk to people, as a Dementia Voice, about living with dementia and the challenges that can present for the family and carers. I have also been able to speak to student nurses as part of their training.  

Basically, I was out of the house most of the time and loving it. If I spent a whole day at home, I was convinced we’d wasted a whole day!

Bernard and Andy smiling together

Noticing a difference following national lockdowns

Lockdown has done something to me that I never thought would happen.

At first it was hell not being able to socialise with the people I cared about and enjoyed being with.

Technologies. like Zoom meetings and Facetime, have allowed me to continue doing some of the things I enjoy. But while it’s a useful substitute, it’s not the same as getting out.

Now I am at home most of the time and I find that I’d rather do that than go out. When the lockdown eased or I’ve had to go out for something essential, that has now turned into hell for me.   

I either make an excuse not to go out or I just stay in the car and dread meeting the friends I would spend time with; leaving everything for my partner to do.  

There have been occasions when I’ve considered that I am becoming agoraphobic, as I get very tense and agitated when getting out of the car. This has even turned into occasional panic attacks.

I’ve tried to deal with this by getting out of the car in the quiet places around me and taking a walk with my partner and the dog. This was going well as little by little I was out and about more in the countryside. I even managed a quick look around a garden centre. Then we went back into national lockdown again.

I’m just hoping that the progress I was making isn’t lost when this pandemic is over.  I want nothing more than life to return to ‘normal’ for us all. I just have irrational doubts right now that it will for me.

How has coronavirus affected people with dementia?

Lockdown measures and tiered restrictions have been affecting people in many ways.

The more common effects on people with dementia include depression or anxiety, loss of confidence or withdrawal due to lack of social interaction, and disorientation with changes in routine (this includes changes to their pre-lockdown routine, as well as changes to the routine they have got used to during lockdown itself). 

For many people, the process of coming out of lockdown and tiered restrictions will be one of re-engaging with the world and getting used to going out, interacting socially, and generally getting back to some form of normality.

It can be useful to look at the routines people were in before lockdown started and look at ways to reintroduce elements of these routines slowly and gradually.

Some activities may need to be adapted for the person, for example rather than going back to a busy shopping centre, a short trip to a local shop might be a helpful way to reintroduce someone to going out and buying groceries again. 

Progression of dementia and changes in behaviour

It is important to note that due to the length of time that lockdown and various tiers have lasted, some people will find that their dementia has progressed which means they are unable to do the same things they used to. These skills cannot always be relearned. This might mean that adaptations will need to be made to help them live as well as they can with the skills and abilities that they have. 

The most effective way to support a person coming out of lockdown or tiered restrictions will depend on the type of their dementia, how far it’s progressed and how it’s affecting them, as well as their individual personality and life history. It is likely that there will be a lot of trial and error.

It is also important to bear in mind that situations won’t always need coronavirus-specific answers.

For example, our online and printed information about changes in behaviour would be very useful whether the changes are caused by being out of practice or losing skills as part of the person’s dementia having progressed. 

Depression and anxiety are common problems associated with lockdown, both for people with and without dementia. It can help to talk to the person about how they are feeling and what specifically might be worrying them about coming out of lockdown. This can help to find ways to support them.

For example, if they are worried about other people getting too close then arranging to go out at times when there are fewer people around can be helpful. 

Talking therapies such as counselling can also help, as they allow the person the opportunity to speak openly with a professional about how they feel, and to find ways forward.

The effectiveness of talking therapies will vary from one person to another and will depend on how each specific individual is affected by their condition. 

You are not alone

Alzheimer’s Society is here for you. We can answer queries about all aspects of dementia, and offer advice and support for all associated challenges, including coronavirus. Our Dementia Connect support line is open seven days a week, and our online community Talking Point is free to use, day or night.

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this is sad

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My 67yr old husband has early onset vascular dementia..besides forgetfulness,anxiety, disorientation,he also has aphasia.Like the majority, the virus didn't help at all..any suggestions how to keep him calm please? Thank you?/

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My highly intelligent husband with very little memory of the immediate past gets very depressed because he isn’t at home with me.I can’t look after him because he cannot stand or walk. and is doubly incontinent. If only I could visit and sit with him everyday but because of lockdown our visits are weekly in a cold unfriendly room with a chaperone and last for only 10minutes or so. We are both getting more and more tearful when talking on the phone. When are we going to be able to meet properly, we have each had one jab, so what is the danger of infection when I’ve also had a test prior to meeting him?Paranoia on the part of officialdom must be the answer.

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Andy thankyou so much for sharing your experiences of lockdown and dementia. I am sure that your positive approach, even in the face of the difficulties that the pandemic has forced upon you, will help so many others. It's good to hear that there have been some positives too, such as your use of technology and clearly your wonderful supportive partner.

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