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What challenges could you expect to face during the dementia journey?

The more you understand the challenges that dementia can bring, the better you will be able to cope. Find out what might happen on your dementia journey

Dementia involves many challenges. Some are fairly straightforward to manage, others can seem insurmountable, yet it’s thankfully rare to find any challenge which is impossible to address. And while every person’s journey through dementia is unique, many people do experience similar hurdles along the way.

Most of the challenges you might face fall into one of the three categories below:

Practical challenges

Ensuring safety and security
Is your home dementia friendly? Take a good look at the bathroom, kitchen, living room, bedroom, stairway, and garden and try to make them as safe as possible. What about security? Is the house set up to keep someone safe without restricting their freedom too much? If they’re prone to wandering, you may need to look into ways you can keep track of them if they’re open to it.

Dealing with finances and legal issues
Work out which benefits you may or may not be entitled to source any grants or tax reductions that are available, find out about free equipment you may be able to access work out how to pay care home or nursing fees and keep on top of bills and changing budgets. Don’t forget about the legal considerations too, such as setting up a Lasting Power of Attorney and making a will.

Keeping life interesting
It’s all too easy for someone with dementia to become bored and lonely, which is why hobbies and interests can be so important. For example, working on their life story provides stimulation and might also lift their mood. In fact, any sort of reminiscence is usually very enjoyable. Finding ways to remain sociable is also important whether it’s joining a choir or art therapy group or going to a day centre or visiting a friend keeping life as normal as possible, will help them feel calm and contended.

Physical challenges

Dealing with incontinence
This can a real fear for many carers, but there are tools to help you cope which will help to maintain dignity. It’s also important to look out for urinary tract infections which can make dementia symptoms worse.

Managing bathing and dressing
Find out how to bathe or dress a parent or partner and help them use the loo whilst respecting their privacy and dignity. Your relationship with the person you’re caring for might change as a result. However, most carers find they do manage to cope surprisingly well.

Eating well
Encourage a balanced diet and look out for issues around swallowing and chewing. A good variety of food will ensure the person you’re caring for stays happy and healthy.

Getting out and about
If mobility has become an issue, or the person with dementia is lacking the confidence to leave the house, getting out and about can be a challenge. However, not only are their products to help improve mobility, there are also activities and groups to encourage people to get outdoors.

Sleep and rest
While restlessness and sleep problems can be an issue for many people with dementia, there are steps you can take to ensure their sleep (and yours) can be as restful as possible.

Emotional challenges

This is often a result of frustration rather than malice and you can usually learn ways to help calm and relax the person with dementia without the use of medication (which should only be a last resort).

Paranoia, suspicion and hallucinations
These can also be very distressing to watch. But generally speaking, most challenging or repetitive behaviour has some kind of logic behind it which, once you understand, can be untangled and managed successfully.

Nobody likes to be stuck for things to do, and that goes for people affected by dementia. And while you may need to adjust some of the activities you do to allow for any other challenges that may be caused by the condition, boredom is one that can be very easily rectified.

Many people with dementia report that loneliness and isolation can be a real problem. That’s why ensuring that the person with the illness has regular contact with carers, friends, support groups or just gets out and about is so important.

Challenges for the carer:

Taking care of yourself
One of the biggest challenges many carers face is paying attention to their own needs. This includes eating a healthy diet, keeping doctors and hospital appointments, recognising signs of stress and depression and acting on them and creating regular ‘me time’ as often as possible. Making yourself a priority occasionally won’t only make you feel better, it will make you a better carer as well.

Deciding when to let go
Possibly the hardest challenge of all is knowing when to hand over the caring to someone else. Watch out for signs that your loved one needs more help – physically, practically or emotionally – than you are able to offer and start looking for alternative living arrangements, which could include arranging respite care, living with another family member or moving to a sheltered housing complex, or care home. Picking a care home or planning for the later stages of dementia can be very tough but take comfort in knowing that you have tried your very best and that you aren’t alone.