[Guest blog] Caring for a loved one with dementia

Senior Practitioner at Hearts & Minds
22 December 2017

If someone you love has been diagnosed with dementia, it can be a time of worry and change for everyone involved. And if you’re going to be responsible for looking after them, not only will you be taking care of them – you’ll need to make sure you look after your own wellbeing too. As a Senior Practitioner at Hearts & Minds, I’ve worked with people with dementia, their families and carers for over seven years. Here I share some of the everyday things you can try as a dementia carer, to help make life a little easier, for both you and your loved ones.

Picture of elderly woman on phone

Embrace change and adopt a new routine

Although change can be difficult, try to accept that life may be different now. You might be used to certain daily rituals and doing things in a particular way, but it could be time to break away from those old habits and form a new routine. Maybe things that were once second nature – like putting clothes on in a particular order doesn’t make sense to your loved one anymore. Perhaps they’re not sure what socks are for or want to put them on last now. Maybe they want to eat dessert before their main meal – and that’s ok.

Try changing things around a bit and see if something new works better for them now. And if you’re feeling resistant to changing old routines, stop and think – who is this old pattern really benefitting? Ask yourself: am I doing this for them or me? Now is the time to be open to change and new experiences and to experiment and try new things.

Bring fun and games into everyday tasks

Completing everyday tasks like setting the table, taking a shower or doing the dishes might be trickier now. So take your time and try turning tasks into a game to make them a little easier. Play your loved one’s favourite music, dance around and have fun on the way to getting chores done. Music is really powerful for people living with dementia as it resonates with them, particularly if they find talking more difficult. So playing their favourite music can bring about positive feelings and pleasant emotions surrounding old memories.

Work together as a team

If your loved one is saying no to things, make sure you have a two-way conversation with them rather than giving them instructions. Although you have their best interests at heart, they might not understand why you’re asking them to do something. So it’s important to find new ways of working together.

Give them the opportunity to be included in decisions by asking them how they might prefer to do something. Try things like laying out a few different choices of clothing for the day and see which one they go for. If they’re avoiding washing for example, ask what they would like to do instead. Go along with their choice and then you can suggest the next steps. It might take five different ways to get to the bathroom, but you’ll both get to where you need to be eventually. And what’s more, you’ll be more likely to arrive there in harmony.

Try new ways of communicating

For some people living with dementia, speech can become difficult and words might not come out the same way. At first this can be upsetting and sometimes frustrating for them. But instead of dismissing or correcting what they say, go along with them. Echo what they’re saying and join in on the conversation. It may feel uncomfortable at first, but doing so will make them feel appreciated and acknowledged.

Using objects to signify certain actions or tasks within the house can also help to ease the anxiety of your loved one trying to find the right words. When talking about having dinner, show them the food, or show them equipment when talking about it. That way there’s less pressure to respond verbally, but there are objects in front of both of you to refer to.

Prepare your loved one for appointments and outings

Changes to your loved one’s environment, such as a trip out for a hospital appointment, can feel very overwhelming for someone living with dementia. Being in unfamiliar territory can bring about feelings of anxiety. So if there’s a planned outing coming up, introduce the idea as far in advance as you can so it has time to settle. Go into the details of what will happen on that day with your loved one so they feel ready for it and revisit the plan with them regularly. Try marking it on a calendar together, pin it up somewhere you can both see and rehearse the plan together the day before.

Take time out for yourself

Don’t forget to take breaks, and have some space for yourself. Whether it’s catching up with a friend over coffee, going for a walk or taking a holiday – looking after your own wellbeing is really important.

Sometimes frustrations can build and you might have cross words with your loved one, which is understandable. Often people living with dementia can forget if they’ve had an argument or fallen out with someone. But they still pick up on the atmosphere and feelings in the room and so they may sense that something’s not quite right even if they don’t remember what was said. But naturally you might find it more difficult to forgive and forget. Try to stay positive, remain patient and let go of any bad feelings if you can. Make sure you have some time out so you can get some headspace too.

Ask for help

Don’t be afraid to ask for outside help. Being a carer for a loved one with dementia can be really hard at times. So be open and honest and talk about your struggles or worries with others. There are support groups and online forums you can join to talk with other people who are going through a similar situation and share ideas to help you cope.

Hearts & Minds received a grant from the Bupa UK Foundation. The Bupa UK Foundation funds practical projects that will make a direct impact on people's health and wellbeing. Launched in 2015, to date it has awarded over £1.4 million in grants to more than 50 projects across the UK to improve people’s mental health, support carers and empower young adults living with ongoing health challenges to live life to the full.

Hearts & Minds is a Scottish arts-in-health charity whose aim is to improve the experience of people in hospital and in hospice, residential and respite care by using the performing arts to encourage communication, interaction and laughter.

The Clowndoctors Programme was started in 1999 to engage with children in hospital, children with complex special needs and children who have undergone traumatic experiences. The Elderflowers Programme uses a unique clown family concept to connect with elderly people living with dementia and other dementia related conditions. Elderflowers was developed in 2001, with the support of the Dementia Services Development Centre at the University of Stirling and it has gone on to inspire many other programmes and organisations across the globe.

For more information on the work of Hearts & Minds visit www.heartsminds.org.uk

Lucy McGreal
Senior Practitioner at Hearts & Minds

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