Caring for a loved one with dementia can be challenging. At times it can feel like a never ending lists of demands which can be difficult to meet, what with the unpredictable and problem behaviours that dementia often entails.
Dementia can make it more difficult for your loved one to remember things, think clearly, communicate with others, and take care of themselves. Mood swings and changes in a person’s personality and behaviour can also present particular challenges for their loved ones caring for them.
In this article we have put together a list of tips and tricks for managing these behaviours and how you might approach them.
But don’t forget, if your loved one presents challenging behaviours, you should always seek professional advice and support to ensure that both you and your loved one get the help you need and deserve.
Understanding their dementia
Understanding how your loved one lives with dementia can make a huge difference to their care. This may not be easy at first but with time you will begin to learn the ins-and-outs of their dementia. It can be useful to keep note of their symptoms and how they react to certain triggers and environments. This can also make it easier when you meet with their doctor or other members of their care team.
It can be helpful to consider the following:
What do they get agitated by?
What do they get confused by?
What are their interests?
What triggers their problem behaviours?
What helps to alleviate problem behaviours?
What are the physical symptoms of their dementia?
What are their psychological and emotional symptoms?
What helps to alleviate these symptoms?
Be clear and patient with your loved one. They might be confused and not understand what’s going on. You can try asking simple, answerable questions and you should state your message clearly. You should also avoid discussing plans with your loved one if they are confused until immediately prior to an event. It’s also important to be flexible - what works one day may not work the next.
Understand challenging behaviours
Remember, your loved one is not being difficult on purpose – these behaviours are symptoms of their dementia. Behaviours also have triggers. It’s important to learn what triggers these behaviours so you can either avoid them or better manage the responses when they occur.
Challenging behaviours often have a purpose. Your loved one may not be able to tell you what they want or need, especially in the later stages of Alzheimer’s. Consider whether they are fulfilled or struggling with boredom? Also find out if a particular behaviour is a sign that a particular need is not being met. Maybe they’re hungry, thirsty, or in pain?
After all, we cannot change the person but we can try and accommodate the behaviour rather than to control it. We can also change our responses or the physical environment but to do this we need to first understand the challenging behaviours. A simple way to achieve this can be to distract with snacks, activities, and humour to try and take their mind off what is upsetting them.
Accept their reality
As dementia progresses, you loved one’s sense of reality can change. It can become more difficult for them to reason and they may focus on things that have happened in the past. It can be helpful to enter their world and accept their reality and to respond positively to their requests and confusion. Not only can this make your loved one feel validated but it can also help to ensure that your time spent with them is positive.
You should respond with affection and reassurance and avoid trying to convince them that they’re wrong. Don’t forget, they may not be aware of what is really the case and suggesting otherwise can be both frightening and frustrating.
Engage their memory
One of the most common symptoms of dementia is forgetfulness. While this can be annoying for a carer, it can be incredibly frustrating for your loved one. In the early stages of dementia, it can feel as though you are losing control of everything, especially when you get lost or forget things like keys or medication that you never previously forgot.
To mediate the effects of memory loss, you can try making lists or reminders for your loved one with things to be done today or with what appointments are scheduled. Engaging them with this list and making it part of their routine can help maintain their control over the situation. You may also consider a large calendar with the day and date visible so that your loved one does not have to struggle to remember what day it is. Attaching the to-do list to the calendar can also make it clear what is on the agenda of a given day.
Maintain a healthy diet
As dementia progresses it can be difficult to maintain a healthy diet and ensure your loved one eats well. Ensuring that your loved one eats well can help maintain their overall wellbeing and immune system and reduce the risk of them developing illnesses, such as pneumonia.
People with dementia often forget to eat. Following a routine can help give your loved one structure and encourage them to eat at a set time. If big meals are hard, split them up into 5 or 6 smaller ones, rather than three bigger ones. You can also make mealtimes relaxing by incorporating things like soft music.
Don’t forget, eating independently is more important than eating neatly but things like sippy cups and straws can help if holding cups becomes difficult. It can also help to sit and eat with them to keep them engaged with eating. You can also encourage eating by preparing foods they like and adapt meal plans to changing preferences.
When eating become difficult, you can stimulate chewing by gently moving their chin in a chewing motion. Cutting food into bit-size pieces or preparing soft foods can help if chewing and swallowing is too difficult. Weight loss is a common issue in dementia, to mediate this offer nutritious high-calorie snacks between meals. Breakfasts high in carbohydrates also promote weight gain. Conversely, if weight gain is a concern, you can avoid high-calorie foods and replace them with fresh fruit and vegetables.
Celebrate the person
It can be upsetting to see your loved one’s personality changing. This can become even more frustrating when they start to forget things from the past, particularly when it is names of loved ones or important dates or events like the death of a parent.
At times like this it can be helpful to remember your loved one for who they were before dementia. Long-term memory is often affected much later than short-term memory and talking to your loved one about their past can be a great way to engage them in conversation and maintain a positive relationship with them. Showing that you value who they were in the past can also make your loved one feel valid and appreciated at a time when they may feel like a burden.
Try and enjoy the moment
It’s important to try and maintain a positive relationship with your loved one as their condition progresses. Important things, such as their relationships, their environment, and the support they receive can allow their experience of living with dementia to still be a positive one.
At times like these, it’s can be useful to focus on what the person still does have, not on what they may have lost. Try to enjoy the moment and try not to spend too much time thinking about what the future may or may not hold. Continue to include them in activities to show that they are still valued and an important part of your life. Maintaining your sense of humour can also help make the whole experience a little easier. This can help you to engage with your loved one more positively.
Professional help and support
Your loved one’s health care team
Check in with your loved one’s health care team regularly to ensure that their symptoms are managed as best as possible. You should also consult their GP or neurologist if their symptoms seem to be getting worse. Other members of their health care team, such as their nurse, speech and language therapist, and occupational therapist, can help manage their symptoms and ensure they are as comfortable as possible.
Consider hiring a carer
Depending on your loved ones needs and your situation as their carer, you may consider hiring a private carer or getting respite care. Research shows that the best care outcomes often result from caring for elderly loved ones in their own home. This can be particularly true for caring for people living with dementia. Although living with dementia can reduce a person’s ability to live independently, if the circumstances are right, home care can prove invaluable in managing their dementia. It allows your loved one to stay in familiar surroundings and remain close to family and friends and their wider support network.
The type of help needed will vary from time to time and will increase as the disease progresses, but with the right support, someone who has dementia may be able to continue living at home for a long time. Thus, arranging appropriate care is key to making them feel safe and secure and a private carer may be an invaluable form of help. It’s also important to remember that this means in no way that you are a failure – you are getting the help that both of you need and deserve.
Look after yourself
Caring for a loved one with dementia can be very emotionally and physically demanding one. If you’re a carer it’s vital that you take time for yourself to ensure that you are in the best position to provide the high quality care that your loved one deserves.
You may want to get the help of other family members of friends or hire a private carer to provide care when you need a break. Your support network is essential.
You shouldn’t put your life on hold, so make sure you prioritise yourself regularly. Continue to meet with friends and participate in hobbies or groups that you enjoy. It’s important that you maintain a balanced schedule – make sure you set time aside for yourself each week – you deserve it! Maintaining a balanced schedule can also make it less likely that you feel resentful to your loved one.
You are there to support and listen to your loved one but do you have someone to support you? Have a friend or family member who you can talk to open and honestly about your life as a carer. Or check out the forums below for dementia carers:
Talking Point – Alzheimer’s UK Forum for anyone affected by dementia
Be prepared for the future
As dementia progresses it’s important to be prepared for the future. Speak to healthcare professionals to find out about the physical, psychological and emotional changes to expect. Joining online forums can also be a great place to learn about other people’s experiences and get advice on how to cope with being a dementia carer.
It’s also important to be pragmatic. Symptoms will likely get worse but there are ways to manage them. Planning ahead can also make sure you can consider things such as hiring a carer or what sort of palliative or hospice care your loved one may want and need.
This can also be a good time to consider things such as your loved one’s will and whether they need a Power of Attorney. It’s always better to do these things before the disease progresses to far so that your loved one can participate in the decisions.