2.1 Strong emotions after a dementia diagnosis

Everyone reacts differently

Whatever your reaction is, it can take time for these feelings to settle down.   

Deborah described “a tidal wave of emotion“.

Natalie said, “it was a relief to put a name to what was happening”.

Joseph felt like “his world just ended”.

Charles said that he “immediately felt protective of his husband and worried about his reaction”.

 Sanjay felt “really angry about the deal life had given them”.

Care partners have told us they felt shocked or numb when they were told that someone in their life has dementia.  

Almost all care partners that we’ve talked to described strong emotional reactions after hearing the diagnosis. Many said they couldn’t listen, think, or do much immediately after the diagnosis as it was overwhelming.  

For some people it takes a couple of days, for others a couple of weeks for feelings to settle down. If it is more than a few months and you’re still feeling extremely distressed about the diagnosis, then it may be beneficial to seek out some help to assist you work through these feelings. Sometimes, these strong feelings can get in the way of helping you move forward.   

Different and difficult feelings

If the person with dementia has been diagnosed when their symptoms have just started, the idea of having dementia can sometimes be more distressing than the current symptoms of dementia.   

Your worries and feelings may get in the way of taking part in and enjoying your daily activities. Withdrawing from activities may increase your feeling of sadness or loss. Working through these feelings can help you get back to enjoying life again. Social stimulation is good for the brain! Read our article about cognitive therapies and rehabilitation. 

Some care partners and people with dementia feel embarrassed or ashamed about receiving a diagnosis of dementia. Dementia is a chronic disease, just like diabetes or arthritis. It’s not something to be ashamed about. Dementia can happen to anyone. Read this article on our website to learn about common myths and stereotypes about dementia.  

Situations that complicate feelings

Some situations in life can complicate already distressing or difficult feelings about dementia. These include situations like:  

• If the person with dementia is younger, their diagnosis can be more of a shock. 
• If a person is still employed, the worry of telling employers and potentially losing a livelihood can be distressing. 
• Long-term relationship problems such as problems with marriages, fractured relationships between parents and adult children, substance or other abuse in families can be made more intense by a diagnosis of dementia. When there are long-term problems in a relationship, care partners may feel guilty if the person they left is diagnosed with dementia. If, on the other hand, a care partner decides to stay in a difficult relationship because the person has dementia, the care partner may feel resentment.  
• Some types of dementia reduce the person’s ability to empathise with or emotionally relate to others. This can be very difficult for relationships and can complicate how you feel about the diagnosis and your ability to give support and care. 
• If the person with dementia asks you not to tell others about their diagnosis, this can also be challenging as you may feel very isolated.   
• Living far away from a relative or friend you want to support can be upsetting. It can also make it hard to support the person as often as you might like. 

If situations like these apply to you, you are not alone.

While difficult, they are not uncommon. You may need to find different ways to give care and support – ways that work for both of you. The first step is to find a way to work through your feelings.