Covid-19 and FTD

Covid-19 has changed the world for many of us.

Much FTD research has had to be put on hold in recent months and the FTD talk team have all had to work from home since early March. However, although we cannot carry on with seeing people in our research studies, the FTD talk team are busy analysing data we have already collected and writing up research studies for publication.

For people with FTD and their carers we recognise that things may be particularly difficult at this time.

Our clinical team are continuing to speak to people with FTD over the phone and our support group co-ordinators are working hard to continue their efforts through virtual support groups and calls to people with FTD and carers.

Both our FTD support group and other support groups around the world have been producing helpful information for carers about how to deal with this difficult period.

In the US, the AFTD have posted a number of useful articles:

• From our GENFI collaborator Carmela Tartaglia about how to help people in long term care
• The challenge of social distancing for people with FTD
• Dealing with hospitalisation during the Covid-19 outbreak

Jill Walton from the Rare Dementia Support FTD Support Group has written the following about caring for people with bvFTD during Covid-19:

Any period of isolation brings with it a unique set of challenges. Embracing isolation in the midst of the current fears and uncertainties caused by Covid-19 inevitably adds to those challenges. Being responsible for the care of a person with bvFTD may well be creating an additional dimension of anxiety into the circumstances you are seeking to manage.

The obvious risks of exposure in relation to Covid-19 may be increased by the behavioural symptoms of bvFTD, which typically include a lack of self-awareness as well as a lack of awareness of others and their needs, and will likely be accompanied by a reduced insight into the need for social distancing precautions at this time. Understanding information about Covid-19 may be additionally difficult for people with bvFTD. Expressing their understanding or feelings will also be impacted. 

When people feel confused, challenged, apprehensive or frustrated, their behaviour often reflects this in ways that are irrational and unprecedented. People with bvFTD are no exception. 

Your anxieties about the current situation and your own safety will naturally be compounded too, by the additional pressures of managing the needs of a household where someone with bvFTD is living. You may well be feeling additional levels of stress at this time. This may be in the form of feeling a sense of constant raised stress levels, or in the way you are more prone to high level reactions – going very quickly from 1 to 100 in terms of stress and fear. 

As a carer responsible for your own well-being, as well as that of the person you care for and your wider community, it is natural that you will be feeling additional pressure at this time. You may also find yourself responding, reacting and behaving in ways that are out of character – this is normal and you are not alone!

What might help?

Everyone is different in terms of identifying the strategies which help them best. We all find some approaches more helpful than others according to our personalities and our individual circumstances. There are several ways in which you might be able to influence the way you are feeling at this time. The following list is by no means exhaustive, but provides some suggestions for you to consider:

• It might be helpful to limit exposure to endless ‘news’ programmes which present the facts from a range of viewpoints, and instead decide to tune in to just one comprehensive and well sourced daily update. Selecting alternative channels to watch or putting on films, story books or music as an alternative to news channels may be helpful. 
• When talking about the news, it might be helpful to break down the news items down into manageable chunks, which you can repeat as necessary.
• At a time when so much feels ‘out of control’ it can be helpful to try to keep as broad a sense of perspective as possible. 
• Try to find moments in the day that you can safeguard for yourself. Even a couple of minutes to yourself is worth taking. 
• Speak out or write down your stresses, fears or anxieties. They lose some of their control over you when you do this.
• Take control over the things you CAN do – for example, time in the garden, cooking a meal, baking a cake, listening to an audio book or a favourite radio programme etc.
• Practice some simple breathing exercises. There are many variations on these, but at their simplest, breathing in for a count of 4, holding for count of 3, then breathing out for a count of 4 [ as far as is comfortable for you] can help you to slow down, focus and gain perspective.
• Be ‘mindful’ – even in these days of limited access to resources, we can make a conscious effort to maximise the experiences available to us. Take a moment to really feel the sense of the water on our body when we shower, or the feel of the softness of the soap suds when we wash up, the smell of the washing as we hang it out , the textures of the ingredients we are preparing, the taste of the food we are eating, etc.
• When fearful of the worst, take a moment to actually consider what the worst thing that can happen might be, and also what the best thing that happen might be. Try to position yourself and your thinking in a manageable place somewhere between the 2 extremes.
• When it feels as if everything is getting too much, try a simple distraction strategy. For example: Look around you and identify 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell and 1 thing you can taste. For the minute or so that it takes you to work through this exercise, you are thinking of nothing else, allowing your mind to re-focus and move you into a different place. 
• Use your hands – it can be very therapeutic to garden (even a window box if you have no outside space), bake, knit, sew, colour, jigsaws etc. Using your hands and focussing on the task really helps to divert your thoughts.
• If you have any extra capacity offer help to someone else, this can feel very rewarding and take your thoughts away from your immediate situation.
• Sleep is key. Try and keep a good sleep routine, keep the bedroom just for sleeping if possible, shut off screens at least an hour before bedtime and have a warm drink or bath to aid restful sleep.  If you are fitful and waking during the night, don’t toss and turn but get up and leave the bedroom and make yourself a drink, perhaps read a book or listen to some quiet music or a podcast and then go back to bed.  Also keep a pad handy by the bed to jot down your thoughts and worries.
• Remember YOU ARE IN CONTROL OF YOUR THOUGHTS, don’t allow them to bully you!

We recognise and appreciate that as carers you are making a huge additional contribution to protecting your family, friends and community against Covid-19. We realise that you yourself may be at increased risk because of the additional burdens that your role as a carer is demanding of you. 

You are giving a lot and making many sacrifices. Thank you so much for all you are doing.

If you need to talk

You are not alone in the circumstances you are managing right now – however we do understand that at times it will feel as if you are. It is natural to feel frightened and unsure in these circumstances. Talking about these feelings will help and there are plenty of telephone and email options available, even at this time of reduced social access. Please get in touch if you want to talk:

Rare Dementia Support : Tel. 07388 220355 or 07341 776317; email: contact@raredementiasupport.org