Why can it be challenging to support a loved one with dementia?

Demenza isn't a disease itself, it's a term to describe a group of symptoms caused by various diseases that damage the brain. The symptoms vary, but can include memory loss, confusion, needing help with day-to-day tasks, problems speaking and understanding language, and changes in behaviour.

Persone con demenza may struggle to control their feelings too - and experience mood changes and irritability. These symptoms get worse over time.

For family members and friends, seeing someone experience these symptoms can be extremely difficult. It's often distressing to see a loved one with demenza become confused or upset - and it can be hard to know how to help or support them. It's also easy to become frustrated too, which can trigger feelings of guilt or solitudine.

Dr Rachel Daly, academy lead admiral nurse at Dementia UK, says dementia is a hidden condition which can lead to practical and emotional challenges for families.

"No matter what type of dementia a person has, it can be very distressing for the entire family to receive the diagnosis as it has life-changing consequences for the person, their family and friends," she says. "In addition, there is still a stigma associated with a dementia diagnosis in many cultures and this makes it hard for people to admit that they might be struggling."

Get support as a carer

You may not consider yourself a carer, especially if the person with dementia is a partner, parent or friend. However, both you and the person with dementia will need support to manage the symptoms.

It can be a good idea to register as a carer with your doctor or apply for a carer’s assessment, which assesses what help you might need to make your life easier. For example, help with food shopping. You may also be able to get benefits for carers, which can help with your finances if you are spending time looking after someone with demenza.

Think about their specific needs

The best way to support a person living with demenza is to provide tailored care for their needs, says Daly.

"Understanding their likes, dislikes and events that form their life, can be useful in creating a support plan that helps them to continue to feel secure and happy," she explains. "This will help you to know that you are meeting all their needs and will help you both to enjoy more quality time together."

This might mean finding ways to communicate that help you to ensure that they are safe, free of pain, not hungry, thirsty or in need of something specific, like the toilet or a nap. People with dementia may be more sensitive to noise, so creating a calm, quiet environment may help them.

Don't test them

Although it may be tempting to try and prompt someone with demenza to remember or understand things, it’s important to be gentle.

It is upsetting to see someone forget people or things that were once familiar, but trying to force them to remember - or testing them - may upset them. Asking someone to remember something can remind them of their condition, which can be painful for them. There’s also no evidence that this will help the person hold onto memories.

Talking about the past can be helpful, but frame it as a conversation that they can join if they want to. "It is helpful to not test them and ask them if they remember a person or an event," says Daly. "Instead, using pictures, smells, music or objects can help to remind them of events. However, if you notice that this is distressing for them it can be useful to try to distract them."

Get pets or children involved

Research has shown that interacting with therapy animals can help people with dementia as they can trigger positive feelings and memories¹. Being around children can also bring joy to people with dementia too - and some nursing homes have schemes in which relatives can bring small children to meet residents². However, it’s important to be vigilant and supervise any interactions to ensure both children and those with demenza are happy and safe.

"Intergenerational work can also be fun and helpful for the entire family," says Daly. "Making pictures, playlists or photo albums together is a great way to enjoy each other's company."

Look after yourself too

One of the most important things to consider when caring for a loved one living with demenza is recognising that you may need help and support too.

"The anticipatory dolore that accompanies a diagnosis of dementia means that you may be trying to process a range of feelings associated with losing your role, relationship and your loved one," says Daly.

If you need advice or support around dementia, you can visit dementiauk.org/get-support for information resources. There are also groups or online forums for carers which provide sostegno tra pari, such as Carers UK forum or the Alzheimer's Society Dementia Talking Point online community.

It's important to take regular breaks from caring. Family and friends may be able to help, or you can access professional support via charities or your GP.

1. Nordgren et al: Photo-elicited conversations about therapy dogs as a tool for engagement and communication in dementia care: A case study.