Caring for Dementia – 7 Common Mistakes and How to Avoid Them

How to Care for Someone with Dementia

It can be challenging and stressful caring for people with dementia, but with the right knowledge, training and support, it can be a rewarding experience. Individuals living with dementia will all have a different response to the disease, some will deteriorate faster than others and their symptoms may vary.

However, there are various things that every person with dementia will need help with, no matter how the illness progresses. Whether you’re providing home care or residential care, here are some things you will be expected to do when caring for someone with dementia.

Everyday Tasks

During the early stages of dementia, most people can enjoy their lives in the same way as they did before their diagnosis. However, as symptoms worsen, they can become stressed, anxious and even scared when they start to forget things and struggle to concentrate and follow conversations.

During this time, it’s important that you as a carer support this person to maintain their skills and abilities alongside a social life. This can help them feel better about themselves, you can do this by:

• Buying them their go-to groceries and helping them cook their favourite meals.
• Helping them stay in a good daily routine which can include exercise and activities.
• Encouraging them to do the things they love including hobbies.
• If you are providing home care, complete simple tasks to keep their home safe and organised.
• Communication is often affected by dementia, so adjust the way you talk and listen to them.
• Posting memory aids around the home/their room to help them remember where things are e.g. put signs and labels on cupboards, doors and drawers.

Submitting a ‘needs assessment’

Anyone with dementia is entitled to a ‘needs assessment’. If you are a professional care provider you will already be familiar with the process of assessing needs, funding entitlements and so on. For those new to social care, needs assessments are provided free of charge from the adult social services department of the local council and in most cases. They can be requested on behalf of a family member or friend, but they need to agree to the assessment. Having a care needs assessment will give social care professionals information surrounding:

• Their health, what the person can and can’t do and what they struggle with.
• Religious beliefs, cultural background, and support network.
• Current living arrangements of the person.
• How the person would like to be supported.
• Information about their needs from their carer and if they want the carer involved in the assessment.

The assessor will need to talk to the person the assessment is for (if they have the capacity to do so) and their GP or nurse. This is to ensure everyone is on the same page about the support this person should have. The council will do their best to help and should consider the support they need and what they might require in the future.

After the assessment, a care plan will be agreed with the person and a copy will be provided to them. This will detail the needs they have and what will help them meet these needs. There will also be a means test to find out how much has to be contributed towards their care and support.

Eating and Drinking

No matter who you are, a healthy and well-balanced diet is an essential component of a healthy lifestyle. Unfortunately, people with dementia struggle to eat and drink enough as they can forget that they are hungry or thirsty. The following behaviours can develop for several reasons, including pain in the mouth (which could be due to ill-fitting dentures or sore gums, booking regular dental check-ups are essential), swallowing problems like dysphagia or general confusion.

Dehydration can be a big problem in those living with dementia which can put them at risk of urinary tract infections (UTIs), headaches and constipation. As a result, this can increase confusion and worsen the symptoms of dementia.

On the other hand, if someone with dementia doesn’t eat enough, they can end up not recognising or forgetting the food and drinks they like. This can lead to them spitting out or refusing food or asking for unusual food combinations.

To help people with dementia, you should get them involved in preparing the meal (if they are able). Avoid rushing meal prep or eating by setting aside enough time for it. Make sure you offer foods that you know they enjoy and give them smaller portions so they’re less overwhelmed. You also need to be prepared for their tastebuds to change, which means they could go off their favourite foods or may require stronger flavours. If someone struggles with cutlery, provide them with finger foods, and offer drinks in clear glasses or coloured cups that are easy to hold.

You should have policies and procedures in place to explain how and why staff can ensure people remain hydrated and healthy. All UK regulators require you to ensure people under your care have adequate nutrition and hydration to sustain life and good health. For example, in England, this is covered by Regulation 14 of the Health and Social Care Act Regulations (2014).

To keep everyone safe and healthy, and to adhere to your regulatory responsibilities, you will need to assess and frequently review people’s nutritional and hydrational needs, taking into account their preferences of course.

People should not be fed or hydrated against their wishes or without their consent unless a best interests decision has been made (under the Mental Capacity Act), advance decisions or similar authorised provisions.

Depending on the individual and the care setting, staff should also record and track people’s fluid intake, and across all care settings, whether they have eaten, what they have eaten, what they have drunk using measurements and so on, to ensure you can detect and respond to risks of malnutrition or dehydration.

7 Common Mistakes and How to Avoid Them

Everyone makes mistakes, it’s what makes us human and while we should never let the guilt take over when they occur, there are certain situations you need to make a conscious effort to avoid when caring for people with dementia. Here are 7 of the most common mistakes when caring for dementia and how to avoid them.

1.      Saying the Wrong Things

One of the first things you need to avoid as a dementia caregiver is saying the wrong things to people. Although it can be tempting to challenge incorrect claims, shame them for poor behaviour or tell them they’re wrong, this rarely leads to positive results and won’t improve their behaviour. Instead, it can increase confusion, frustration and upset. Some examples of things you shouldn’t say include:

• Telling them that they’re wrong about something – Contradictions or corrections when they say something wrong is unnecessary. If they’re alert enough they will see their mistake and correct themselves, but if you correct them, they may feel bad about it or embarrassed, even if they don’t fully understand their error.
• Asking them if they remember something – While it may be tempting to ask if they remember a person or event if they can’t (which is likely) it could lead to embarrassment or frustration. Instead, talk in first person about the memory (‘I remember…’) and if they recall the moment, feel free to have a conversation until they disengage.
• Reminding them that a loved one has passed away – Whether it’s a deceased spouse, friend or family member, it isn’t uncommon for those living with dementia to forget that they’ve lost a loved one. They may get confused or hurt that they haven’t seen this person for a while. But telling them that this person has passed away can lead to anger and devastation, and they’re likely to forget what you have told them shortly after. An exception is if they ask you if the person has passed away, then you should be honest with your response, and then try to change the topic.
• Bringing up other subjects that could upset them – There’s no reason to bring up something that could lead to a distressing response. For example, if you don’t see eye-to-eye on something political or in the media, just don’t bring it up or if they do, try to change the subject. Bringing up debatable topics can turn into a pointless argument and leads us to our next point.

2.      Getting Angry

While caring for someone with dementia can be frustrating, you should do your best to avoid getting angry and arguing with this person. Those living with dementia will have a limited ability to understand the world as we see it which can digress over time. This means you need to put your pride aside at times and try to see the world from their point of view. This simple adjustment reduces arguments.

For example, if someone is insisting that they haven’t eaten all day even though they had lunch an hour ago, just respond with something like ‘Oh really? Well, let’s get you a snack then!’

3.      Treating Adults Like Children

Most of the time, people with dementia will struggle to communicate and may ask you to talk slower and use simpler words to help them understand. Unfortunately, this can lead to caregivers treating their dementia clients like children and talking down to them. While this may not be on purpose, it is something that you should make a conscious effort to avoid.

When communicating with someone with dementia, keep in mind that their intelligence hasn’t deteriorated. The only thing that has changed is their ability to understand the complexity of the world and how to verbally express themselves. So be confident and engaging when speaking to these people, you may need to adjust the way you talk but they’re still adults, they just see the world differently.

4.      Taking Away Their Dignity

It’s easy to strip people living with dementia of their dignity by taking over and doing everything for them. While safety will come first at times, if they can complete a task on their own or even with supervision, then let them do it. Allowing as much autonomy as possible and working with people will help them feel independent and can even improve their mood, confidence and cognition.

The best way to prepare for this is to discuss the process with the client early on. Trying to find a balance between reasonable safety and preservation of dignity and choice is key to working together.

5.      Making Poor Assumptions

There are many things that you shouldn’t assume when dealing with people with dementia. For example, assuming that everyone with dementia is the same is a common mistake people make when caring for those with the disease.

However, every person with this diagnosis experiences the disease differently and everyone who has dementia is still as much of an individual as those who don’t. While there are guidelines and behaviours to look out for, people will respond differently to your approach. Another thing to remember is that some days will be easier than others, every day is different which is the typical nature of dementia caregiving.

E.g. Stealing and Abuse

If someone with dementia is telling you that a caregiver is stealing from them or emotionally or physically abusing them, never overlook this claim and assume that they’re wrong. Known as a closed culture in care, these things can happen, so listen to them carefully, be respectful and investigate the claim to the best of your ability. If you find any evidence to support it, report it instantly.

On the other hand, you shouldn’t immediately assume that they’re right either. Sometimes, accusations can be thrown around simply because the service user can’t find what they’re looking for or they’ve got confused. Paranoia is also a symptom of dementia. As before, listen to their story intently and try to find what they’re looking for without a fuss. If abuse claims are made, don’t jump to conclusions. Look for physical marks on the body or distressed behaviour around certain individuals.

6.      Using Medication to Settle Behaviours

Medication can bring peace to people with dementia and slow down the progression of the disease, but you should never reach for drugs to settle difficult behaviours. Instead, try to understand the reason for this behaviour by going through a mental checklist. For example, could they be hungry or dehydrated? Are they too hot or too cold? Are they experiencing pain?

Determining the underlying cause by taking the time to find out why they are upset can often resolve the issue and take care of what may be seen as problematic behaviour.

7.      Giving In to Refusals

Just like anyone else, people living with dementia can experience pain which can lead to complaining and the need for medication. While some people will take this willingly, others may refuse. If someone with dementia is categorically refusing food, drink or medication, it can result in serious problems further down the line. Giving into refusals may feel like the easier option, but finding a way to negotiate with these people will improve their well-being and their behaviour.

Finding Support for You

Looking after yourself and finding the right support is key to caring for someone with dementia. Not doing so is a common mistake that you must avoid. The role of a dementia caregiver can be a stressful and demanding job. Your needs as a carer are just as important as the person you’re taking care of and should never be overlooked.

Ask For Help

Never be afraid to ask for help if you need it. Whether you want support from your co-workers, management, family and friends or others going through the same thing, these people can help in more ways than you think. This could be anything from giving you time off or taking over your responsibilities for a day, to doing an activity with this person or taking them to a memory café.

Attending support groups or talking to other carers at work can help you feel less alone as these people will understand what you’re going through. It’s also a great way to share tips and get good advice. If you’re struggling to talk about things and you feel like you can’t handle the stress, there’s plenty of help out there in the form of therapy and counselling (which can be in-person or online) and special services.

Caring for Someone with Dementia Resources

Taking care of people with dementia isn’t easy. There will be good days and bad days, but knowing how to deal with those living with dementia and certain situations will reduce the risk of difficult days occurring and improve everyone’s general well-being. Remember that the key to success is looking after yourself. Finding the support you need to succeed and asking for help when necessary shouldn’t be overlooked.

Educating yourself on people with dementia is important, as it helps you to understand how they see things and why they may behave in certain ways. Fortunately, we’re here to help. Our A-Z of Care Regulations and Compliance – D is for Dementia allows you to step into their world and understand how their minds work, plus it contains information and resources that can help you improve quality of care. We also have a dementia awareness training course on our Health and Social Care eLearning platform.

We at The Access Group have been digitising care services across the world for over 30 years. We know that the right health, support and social care software can boost efficiency, save time and reduce costs. Whether you’re providing home care to dementia patients or they live on-site in a residential care home, you should consider implementing electronic care planning. This allows you to create easy, quick and convenient digital care plans to improve the day-to-day lives of your team and service users. 

If you would like to learn more about digital care planning or you want to book a demo, please do not hesitate to get in contact with our team.