The impact of dementia on family members and carers

Some 700,000 individuals in the UK are caring for people living with dementia. While there are many challenges for those with the condition, it also impacts family members and carers, who can find themselves stretched both physically and emotionally.

It’s vitally important that carers have access to the help and support they require to avoid carer burnout. Changing relationships as a result of a person living with dementia can be very stressful, while carers can also find the demands on their time difficult.

Everyone’s experiences with dementia are different and the circumstances around care can also vary dramatically. Taking all these factors into account is key to ensuring family members and carers find the best solutions to help those living with dementia without sacrificing their own wellbeing.

Emotional impact

Much of the impact of dementia on family members is emotional, with loved ones acting differently. This can manifest itself in a number of forms, from the way they demonstrate love and affection to violent outbursts or even not recognising members of their family anymore.

When the affection you’ve experienced from a loved one your entire life changes because they’re living with dementia, it can be very unsettling. What’s more, it can sometimes manifest itself at inappropriate times, leading to awkward situations.

It’s important to remember that such shifts in behaviour are the result of the disease and not your individual family member. Acknowledge your feelings and talk about them, so you have an outlet for the grief you’re feeling over the loss of your previous relationship.

Even the most mild-mannered people can have angry outbursts when living with dementia. This is usually the result of frustrations and difficulties communicating their needs. While this can be shocking, carers should remain calm when dealing with the situation.

As a family member or carer, you’re not expected to constantly deal with angry or violent outbursts without it affecting you. On occasion, it may be necessary to step away from your loved one and take a few moments to yourself.

When a person living with dementia doesn’t recognise you or confuses you for somebody else, it can be difficult for both you and them. The first thing to do is reassure them and smile, as this will help them to know they’re safe.

Strategies to help them remember family and friends include showing them photos of important celebrations like weddings and birthdays; wearing the same clothes so they associate a specific top with you; and talking about long-term memories, as they’re more likely to be able to recall those than things from the near past.

Practical impact

As the condition progresses for a person living with dementia, they’re likely to rely on a family member or carer more and more. In the early stages of the disease and when they have the mental capacity to do so, it’s important to involve the individual in as many decisions as possible.

They should also be encouraged to continue with the tasks they can do themselves, even if this is with some support, to help them maintain their independence as long as possible. This will also reduce your load, if even in the short term.

Over time, a carer or family member is likely to find themselves spending more time looking after the person living with dementia. While assisting with getting dressed, washing and eating are amongst common tasks that require support, there are other areas that can be often overlooked.

Organising financial affairs, respite care and life admin can take a toll on loved ones who need to fit it around other commitments. Caring responsibilities can have an impact on many areas of life from work to parenting and getting enough time to look after yourself.

The NHS has a list of resources and places carers can turn to ensure they don’t become overwhelmed while coping with a person living with dementia. Often, talking to other carers can provide useful insight into strategies to cope, as well as an understanding that you’re not the only person in this situation.