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I have to do everything now! The increased workload of carers

Updated: Dec 19, 2023

Dr Kellyn Lee is a BPS Chartered Psychologist. She is the Founder of The Dementia Care Hub and provides training and coaching for families living with dementia, helping them to adjust to the changes dementia inevitably brings.


In this blog Kellyn discusses the challenges dementia can bring in terms of workload changes in the home. She provides some background in terms of why these changes occur, and the feelings of resentment this can cause. Dr Kellyn provides some practical tips on how we can support our loved ones, reducing the weight of the workload on the family and how we can sit with the feeling of resentment and in turn reduce its impact.



Background information


Dementia is an umbrella term for a range of progressive conditions that damage the brain and affect how the brain functions. Dementia is not a natural part of ageing and is not just about memory. Dementia affects how messages are transmitted, how information is retained and retrieved and how people process information. The impact of this is that people living with a dementia can find it difficult to carry out the domestic chores they has done in the past.


I work with people living with dementia and their families both in the community and in care homes. I have a background in dementia research spanning over a decade and have worked in practice even longer. One of the things research has shown and has done for decades, and is something I constantly see in my work are care partners who are facing exhaustion and symptoms of burnout. This is a real risk for a carers own health and can be caused by an increase in workload both mentally and physically.


Often, we have certain jobs that we take ownership of in our relationships, one person might be the person who puts out the bins whilst another is the person who does the cooking. Household chores may be divided between couples, and this can work just fine until dementia enters into our lives. It is important to say that a person living with dementia is still capable of many things and it is important to support their identity by enabling them to continue to do as much as possible. However, as time progresses and the damage to the brain gets worse carrying our everyday tasks can become difficult and frustrating, for both the person living with dementia and their loved ones.


What I have found is that care partners often take on too much, they attempt to do the things their partner has always done. Not only does this mean care partners have an increase in workload but they also have to think a lot more, and even learn new skills. This is a lot to manage whilst also dealing with the emotions that show up as a result of the living with a person who has dementia. When this happens carers can often feel resentment, this by the way is perfectly normal. However, when resentment shows up it can also lead to other negative emotions such as anger, sadness and feels of overwhelm. It can also increase stress.


How might we reduce workload and in turn the level of resentment felt?


This might seem a common sense question however when dementia enters into our lives carers tend to take on way too much and find it difficult to reduce their workload. Many reasons for this are independence, autonomy, not wanting or being used to asking for help, not wanting others to think they 'can't cope' or protection of their loved ones identity.


Lets get a few things straight, asking for help is not a weakness, it does not mean you cannot cope. What is means is you have identified that due to dementia and the changes that it brings, you need support with certain areas of life. This in itself is a strength. Taking time to recharge your batteries by getting other people to do things means you can continue to support your loved one at home for longer. Self care is also important but understanding what that means for individuals is often tricky as we tend to think of others first.


When people take on too much or begin doing things they don't really want to do but think they 'should' this will often result in feelings of resentment. Now when resentment is present this can take hold in many different ways. It can mean that you have lower levels of patience and you may experience lower levels of tolerance. You may feel anger or frustration. You may feel exasperation and exhaustion. The first thing to do is notice you are feeling these things. I suggest a technique taken from the Acceptance and Commitment Therapy method called the STOP method. Acceptance and Commitment Therapy is a psychological therapy I use with all of my clients with very good results. The STOP method is as follows:


S - Stop and take 5 deep breathes, focuses on the breathing


T - Take notice of the thoughts that are running through your mind


O - Open yourself up to the emotions you feel, where in the body you feel these


P - Proceed in a way that feels right to you, being the person you want to be


Using this method can help you to notice the effects being a care partner has on you, but also to think more clearly about what you need.


In terms of increased workload it would be important to think about whether you can:


1. Get someone else, paid or unpaid to do the job, for example can you employ a cleaner or a gardener to reduce the workload? Can you get shopping delivered to your door rather than going to the shops?


2. Are you able to ask family members for help while you carry out the extra tasks?


3. Can your loved one take part in external activities and groups for people living with a dementia so you can take some time for you but also to carry out the increased workload?


It is important where possible to enable your loved on to still engage in activities they have always done or new ones they might like to try but understanding this will also add to your workload is important. This is why it is essential that you choose which things you want to support your partner with, which chores you are willing to do yourself and which chores you can delegate or find a less tiring solution.


It is important to note that everyone is different in terms of how they are with dementia, the relationships they have with others, the circumstances within which one lives and how they want to live. It is also important to note that negative emotions will show up and this perfectly normal as they come from a place of pain, watching the other person begin to lose the ability to carry out tasks can be upsetting so again it is important to look at what can be done to remove or reduce the number of times you experience this, where possible.


For more information about coaching and courses book an appointment with Dr Kellyn Lee by completing an appointment form on our website or calling 07769 009599.




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rob
Nov 03, 2023

Very perceptive point that we don’t hear about in the help literature. Whether a man or woman partner, the extra work could be different. In my case as a man supporting a wife with Alzheimer’s my extra work is house related like shopping, cooking, housework etc, which was either shared or the things my wife enjoyed seeing as her domain. If the “dice” had rolled the other way, she would have struggled with managing finances, investments or cars … not because she’s not a competent intelligent woman but because these areas interested me but not her. I’ve sought advice from family and friends or paid professionals to do things my wife would have done herself, for example come to the…

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