How can you ease feelings of helplessness for someone with dementia?

Everyone wants to be in control of their own life, but when you have dementia or are caring for someone with dementia, this can become increasingly difficult, so it's no wonder that feelings of helplessness become increasingly common. Here’s all you need to know about the issue of helplessness and what you can do to prevent it

Dementia-related diseases such as Alzheimer's or vascular dementia are progressive diseases which means they develop at their own rate. Some people can remain only mildly affected for years before trickier symptoms of dementia start to emerge. Others may deteriorate more quickly, and it's the ‘not knowing’ part of the condition that is really difficult to live with and which can leave many people feeling helpless. After all, if you don't know what tomorrow will bring, it's natural to feel a certain amount of helplessness.

Why do people with dementia feel helpless?

- They are reliant on others to do things
It can be immensely frustrating to realise you simply can't do the things you used to do. This could be anything from filling out a crossword, making a cup of tea, finding your way home from the shops or getting upstairs to your bedroom.

Suddenly, being reliant on other people to do these things for you, or having to find other activities to replace things you used to do easily will inevitably cause feelings of helplessness. Being sensitive to this fact, and offering alternative tasks whenever possible, can help overcome it, but make sure you don’t patronise them.

- They don’t understand why they can’t remember things
You can’t control dementia or its unpredictability. You never know how much they're going to remember or how much they're going to forget - and neither do they! Moments of lucidity, when someone with dementia suddenly realises how confused and forgetful they've become, can be frightening in themselves and cause even more feelings of helplessness.

While repetitive behaviour can be a frustrating side effect of forgetfulness and confusion, you need to weigh up the pros and cons of constantly 'reminding' them that they've done or said this many times before, or of just 'going with the flow' and letting them tell you something for the umpteenth time. If it’s likely to cause distress, it may be best to provide support or information again, rather than leaving them feeling upset or disturbed by information that to them, is completely new.

- They can’t communicate their feelings
Dementia can affect language ability, particularly for those with frontotemporal dementia (sometimes called Pick's disease), and being able to verbalise what they need or want can cause a great deal of helplessness and frustration.

If this is a problem for someone you care for, make sure you give them plenty of time to communicate with you and don’t rush them. Make use of visual communication as well as words by using plenty eye contact. When talking to them, speak clearly, calmly and at a slightly slower pace.

Real v learned helplessness

While dementia can affect your ability to do certain things, it’s important to not encourage something called ‘learned helplessness’. This happens when your expectations of what they are capable of doing become unnecessarily low, and unwittingly, lead to a decline in their true abilities, or what is sometimes known as ‘skills atrophy’ (atrophy means shrinking or wasting).

Essentially, this means that if you’re constantly doing everything for them (even if they don’t actually need you to), they’ll eventually forget or be unwilling to do these things themselves, and will appear increasingly helpless.

The key is finding the balance between helping someone when they need it, while encouraging them to be independent when they can.

Why do carers and loved ones feel helpless?

Feeling helpless is as much an issue for the carer as it is for the person with dementia. It can be heart-breaking to watch a loved one struggle with dementia, and unless you know what to expect (which is tricky when every case of dementia can be different) and understand why it's happening, it’s very common to feel helpless.

Feeling overwhelmed by the job ahead of you or lacking support, can trigger carer helplessness. So can the dementia symptoms themselves (which can often see you go round and round in circles) or sudden changes or deterioration in behaviour.

As the illness progresses many carers feel increasingly helpless and isolated. But it's important to remember that you aren't alone and there is plenty of support available - be it emotional or financial - so make use of it. Nobody expects you to be a superhero all the time, so if you are feeling helpless, make sure you ask for help!