The emotional rollercoaster of living with dementia (Part 1)

Nov 19, 2018

The emotional rollercoaster of living with dementia (Part 1)

The emotional rollercoaster of living with dementia (Part 1)

Posted in : All, Dementia Care, Living with dementia on by : Giulia Melchiorre

How we interact and bond with others is significantly influenced by how we are feeling during that moment in time. Our emotions shape how we experience each day. This is also true for people with dementia who not only have to deal with the turbulent emotions that accompany receiving a diagnosis, but also the impact the dementia may have on their emotional processing ability. As a carer you may ask yourself: How is the person feeling about receiving the diagnosis? Will they feel happy or sad at later stages when their memories fade? Thinking about such questions can be very upsetting, and it may be helpful to discuss your feelings with family, friends or a professional- remember that you are not alone!

Before we answer any of these questions it is important to realise that any emotional changes that a person with dementia may experience is likely caused by the disease. Understanding and processing emotions is actually a complex process. So you can imagine, with dementia affecting different parts of the brain, the ability to carry out these processes becomes that much more difficult.

The emotional impact of receiving a diagnosis

When someone receives a diagnosis of dementia they may react in many different ways. It is natural to feel grief, loss, anger, shock, fear or disbelief; to feel scared about the future and the idea of forgetting parts of your life; to feel upset about how this will affect family and friends. But the person may also notice a sense of relief as they now have an explanation to  why lately things have been feeling a bit off. Dementia Australia has put together a short video, where people who have received a diagnosis of dementia talk about how it made them feel. This provides very useful insights into what it is like to receive a diagnosis and can be extremely helpful for anyone trying to provide support to someone with dementia.

Tip: If someone you know has been diagnosed, do not dismiss their worries. Instead when you see them, pick a comfy place with a cup of tea and listen to what they have to say. Share how you feel with them, and show them that you are there for them. At times a sense of humor may help if it feels right.

Controlling your emotions

People with dementia may have less control over their feelings and how they express them. This could involve someone being irritable more than usual or overreacting to things. They may feel less interested in the world around them. Someone with dementia may also react more emotionally to a situation because they are no longer able to remember all the facts or think clearly about a situation.

Tip: Look beyond words or behaviours and try to understand the feelings that the person may be trying to express. Understand that strong emotions can be caused by unmet needs. Perhaps you can work out what these are and try and address them.

Emotions without memories

Is it possible to experience an emotion without remembering why we felt that way? Interestingly, the answer to that question is yes. When people with memory difficulties watch a happy movie, they may not remember much of the movie afterwards but they can carry the feeling of happiness for the rest of the day. This has been observed  in people with Alzheimer’s disease as well. Unlike what one may think, the worse the memory, the longer the feelings can last.

“I feel like all my emotions and feelings are rushing in on me. It’s extremely confusing and I do not like that feeling.”  – Person with dementia

Tip: How we feel during a certain situation is a much stronger memory than the event itself.  . So even if someone may not remember your name, they will remember how you made them feel. Seek positive memories by doing things that they love to help someone with dementia feel happy in the long run. This can also minimise negative behaviours.


This article is based on research publications and information from well-known organisations in the dementia space. Sources include:

Scientific paper: Emotion detection deficits and decreased empathy in patients with AD and PD affect caregiver mood and burden

Alzheimer’s Society guide: The psychological and emotional impact of dementia

Scientific paper: Feelings without memories in Alzheimer’s disease

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