Caring for someone with dementia is likely to be challenging and at times frightening. Thankfully there’s support, advice and coping strategies available to stop you from feeling overwhelmed.
We’ve created this guide to help you navigate your way through your caring role.
- Support available for Dementia carers
- Communicating with someone with Dementia
- Helping with common issues experienced by people with Dementia
- Making a home Dementia-friendly
- Keeping people living with Dementia active
- Advance planning for making decisions on their behalf
Support available for Dementia carers
There’s no manual on how to look after someone with dementia, nor is there a job description for the role of the carer.
It’s not something you have chosen, all you can do is give the best care you can. But to be able to offer the best care, and have the energy to keep this up, it’s crucial you know what help is out there.
You may be entitled to financial support if you spend at least 35 hours caring for someone, this could be your mum, dad, elderly relative or even a neighbour.
Take a look at our Complete Guide To Carers Allowance which tells you how to apply, what the eligibility rules are and gives an idea on what kind of support you may be entitled to.
Taking care of yourself
We’ve put together a useful guide with advice for Dementia carers, as caring for a parent with dementia at home can quickly become overwhelming if you don’t inject some ‘me-time’ or ask others to provide support allowing you to recharge every so often.
Dementia Carers, a charity supporting family carers, provide professional dementia support and run courses to boost your knowledge on this complex and every-changing condition allowing you to become an effective caregiver. They’ll also teach you techniques to increase your own wellbeing along the way.
Talking/communicating with someone with Dementia
Talking to someone with dementia can become extremely frustrating as they can be quick to forget, unable to think clearly and may find it difficult to find the right words. This coupled with potential mood swings and a change in personality will necessitate the need to change the way you usually communicate.
Here are our top tips allowing you to maintain a quality relationship with the person you are caring for and to stop your stress levels reaching maximum levels:
- The right body language. A lot can be picked up from your facial expressions and the tone of your voice. Remain calm and show your affection not just through the words you use.
- Limit background distractions. Simple things like turning off any background noise will help you get their attention.
- Speak simply. Now is not the time to impress with your vocabulary knowledge. Use simple words and if the sentence is not recognised or replied to, wait a few second and reword. Only ever ask one question at a time.
- Use visuals. Let’s say you are asking your mum which blouse she wants to wear that day. Instead of asking ‘do you want to wear the white or the blue one?’, show them to her making it easy for her to understand what you are asking and simple to reply to.
- Be patient. This is probably one of the most important tips. Replies to your questions may not always come in the form of words, look out for other signals to indicate negativity or agreement. It’s also OK to suggest words, but don’t jump in with them too quickly.
- Tell, don’t ask. If your elderly parent is struggling to provide answers, shift the way you communicate. Instead of asking ‘are you hungry?’ or ‘what would you like to eat?’, state, ‘we are going to eat now’.
- Move away from upset. There will be times when conversations may get too tough and simply aren’t getting anywhere. To save agitation don’t force the chat and move on to do something else.
- Dealing with confusion. You’ll find that the person with dementia often talks about events which may not be real. Don’t tell them that they are wrong as the feelings they are expressing are real to them. Gently, and with reassurance, get the conversation back on track if you can.
- Talking about past memories. Everyone with experience of caring for someone with dementia knows that their past memories become extremely precious to them and they can recall events which happened decades ago. Asking general questions about their past will spark joy in a conversation.
- How not to talk about past memories. When someone has memory loss, they can forget important things, for example, that their mother is deceased. When we remind them of this loss, we remind them about the pain of the loss. Turn the conversation to something else or use a distraction technique.
- Physical contact. The person with dementia may feel anxious when talking. Affectionate squeezing of the hand or light strokes on an arm will provide necessary comfort.
- Have a laugh. Even when someone seems to have lost their ability to remember recent things, they tend not to lose their social skills and will relish laughing along with you at funny tales.
And finally, a word of advice for you, the carer. One of the hardest things to do is to remember that you are responding to a disease, not the person who once was. Everyone with dementia has times when they make perfect sense and can respond appropriately. This can be very confusing. You are not imagining things — just treasure the moment.
How you can help with common problems experienced by people living with Dementia
Help with eating
There’s a long list of reasons why people with dementia lose interest in eating. But one thing we can be sure of is that a nutritious diet helps with their health.
Our article listing some of the best practical tips to help someone with dementia to eat more will provide some useful hints to make mealtimes easier.
Help with washing/bathing
Whilst your elderly relative may forget good hygiene routines, they may remember that washing and bathing is something that should be done alone and in private.
Introducing these tips will reduce anxiety and make personal care and washing less stressful for both of you:
- To reduce agitation levels and to provide some comfort, stick to familiar routines. Try to remember as much as you can about previous habits, what was their preference – a shower or a bath, did they wash their own hair or go to a salon, and what was different about their morning wash to the one they take before going to bed.
- Make it as private as possible. Keep curtains drawn and use towels to help with their modesty.
- Be mindful that people with dementia are more sensitive to changes in temperature so ensure that the bathroom and the water is warm.
- It’s a good idea to install things like grab rails in the bathroom and inexpensive items such as non-slip bathmats.
- Prepare the bathroom with everything needed so the person being cared for is never left unattended.
anything causes too much anxiety, consider alternative ways of doing things.
For example, if washing the hair is too distressing buy a leave-in dry shampoo.
Help with sleeping
Dementia sleep disorders are quite literally a nightmare. The impact has an ever-increasing ripple effect on everyone involved.
Our comprehensive article on how to help someone living with dementia get a better night’s sleep will steer you in the right direction.
Help with incontinence and using the toilet
Accidents will occur. When health diminishes it is common for bladder or bowel control to diminish, it is also common for the person with dementia to forget where the bathroom is.
Remember that even though it is unpleasant for you to deal with, your elderly mum or dad may be extremely embarrassed and need reassurance from you that they haven’t done anything bad.
Here are some tips on how to approach this sensitive matter:
- Ensure the person you care for drinks regularly throughout the day (less so in the evening before bed). Limit tea and coffee as these have a diuretic effect.
- Assist them to the toilet an hour or so after the drink and build this pattern into the daily routine. They will welcome the structure.
- Place signs in the house showing the way to the bathroom.
- Ask for a commode from their GP and place in their bedroom. Ensure they know that they are to use this at night-time.
on how often these accidents occur encourage the use of incontinence pads and
the wearing of easy to remove clothes.
Help when someone with dementia has a tendency to wander
There are several reasons why someone with dementia will wander off. It could be that they are bored, they are looking for something or it could be a side effect of their medication.
Finding out the reason for the wandering can prove helpful. Here are some useful pointers to keep your elderly relative safe and prevent you from constantly worrying.
- Place child-safe covers on door handles or have keyholes re-allocated to make them lower than eye level. A person with dementia may not think to look in a place they don’t expect the keyhole to be. But always be mindful that others must have easy access into the house and bear in mind fire and safety concerns.
- If you know that the person you care for will not leave the house without a certain object, ensure it is out of sight. Things like purses and coats.
- Encourage them to wear an ID bracelet and sew labels into their clothes. You can also look into GPS technology to track their location.
- Speak to neighbours and make sure they know how to contact you if they have any concerns.
- Depending on the severity of the dementia, painting a black square or placing a black mat before the front door can appear as an impassable space.
- Place a note saying ‘STOP’ anywhere which may present a risk such as an external doorway.
Would you know what to do if the worst case happened and you don’t know the whereabouts of your mum or dad? Our helpful article on the Herbert Protocol tells you how to prepare and what action to take.
Making a home Dementia-friendly
It’s heart-breaking to see what was once a busy family home turn into a place that can cause agitation, harm and upset. There are ways your parent can continue enjoying their home safely without making the place unrecognisable, here’s how:
Compensating for failing eyesight
- Create contrast with colours to make things easier to see. It’s so much easier for someone with dementia to see a light switch if the backplate is a different colour to the wall. Think about what else you can make stand out with colour.
- As soon as the sun comes up, open the curtains and blinds to let in natural daylight.
- To encourage a healthy sleeping pattern and the circadian rhythm match the lighting in the home to the cycle of night and day.
curtains when it gets dark outside, this prevents reflections on the windows
which can appear confusing to someone with dementia.
Making a house Dementia friendly
- Remove rugs, or at the very least, tape down the edges so they don’t lift and cause a trip hazard.
- Tidy up cables.
- If mirrors cause agitation remove them.
- Set the water temperature to warm, not hot.
- Leave internal doors open.
- Create a list of useful phone numbers and leave by the phone – it’s a nice idea to use photographs by people’s names.
- Get rid of bold prints on walls and on floors and replace with calming colours.
- Buy a board to write or stick post-it notes on. Place on the board helpful information, daily routines and to do lists.
- Keep all cleaning products locked away or remove from the house altogether.
- Set aside an area where keys and items such as purses and glasses are to be kept.
- Make sure there are no locks on internal doors.
- Use labels around the house describing what things are, for example what is in a drawer or a sign for the bathroom. Better still, be visual and use photographs.
Keeping the sitting room safe and comfortable
- Try not to use strong overhead lights but opt for wall mounted lighting instead. If using table lamps, ensure their position is safe and the cable does not run across the floor.
- Have a dedicated spot where the remote controls are kept
- Dot about photographs to trigger positive memories.
Keeping the kitchen safe
- Keep this area as clutter free as possible.
- Buy a timer to remind your elderly parent when something is ready.
- To make things easy, remove the cupboard doors. Alternatively place pictures of what is inside the cupboards on the doors.
- Buy some brightly coloured dementia friendly gadgets to make the safe preparation of meals easier.
Keeping the bathroom safe
- Use non-slip mats in the shower or bath.
- Consider installing a bath-seat and grab rails.
- If the floor has a shine to it, replace it. If the floor looks wet this can bring on anxiety.
- If necessary, raise the toilet seat.
Keeping the bedroom safe
- It’s a good idea to install motion sensor lights if your parent tends to get up in the night to use the bathroom.
- Use lamps which are easy to turn on and off – the ones where you simply touch the base work wonders.
- Place shoes and clothes away to avoid clutter.
Out of the house – keeping people living with Dementia active
Having dementia doesn’t mean everything has to stop. Getting out there and staying active is a medicine we shouldn’t dismiss.
Mix activities up to boost physical and mental health as well as spark some creativity. It’s great to continue doing things together. It doesn’t matter if things take longer to do, the fact that you still enjoy taking part in activities is a gift to be cherished.
Ideas for dementia friendly activities
- Visit a memory cafe (sometimes called a dementia cafe) .
- Take your mum and dad to a class. What do they like doing? You can choose from dance, swimming, painting, book clubs, walking groups and more.
- Together you can try yoga or tai-chi.
- Find your nearest Singing For The Brain group if they like singing – it doesn’t matter if they are any good at it or not, it’s purely for enjoyment – they won’t be expected to audition for the X-Factor.
- Search for dementia friendly cinema screenings and live theatre events
- Create a sensory garden or fill a smaller space with plants, flowers and objects that stimulate senses.
- Take a short break together. Organisation such as Dementia Adventure are designed to meet your needs.
Advance planning for caring for someone with Dementia – legal considerations
Along with keeping your mum or dad safe and keeping them active you’ll need to put your legal and financial hat on too.
To help you we’ve created an article about the legal and financial considerations which covers:
- Setting up a Power of Attorney for a parent with dementia
- Ordinary Power of Attorney
- Lasting Power of Attorney
- Property and Financial Affairs LPA
- Personal Welfare LPA
- How the Court of Protection can help
- An advanced decision or Living Will
- Funding dementia care
You cannot be the perfect carer
Don’t put additional pressure on yourself.
There is no such thing as a perfect carer. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the care journey.
You might like to listen to our podcast with old age psychiatrist Dr Alex Bailey talking about Dementia, and particularly those who care for someone living with the disease.