2.1 Strong emotions with a dementia diagnosis

Carers and people with dementia describe strong emotional reactions to being told the diagnosis. Many said they couldn’t listen, think or do much immediately after the diagnosis, it was so overwhelming. Some found it difficult to cope with the variety of emotions they felt.

• Deborah told us she “felt a tidal wave of emotion.”
• Sally said it “was a relief to put a name to what was happening.”
• Josef felt “his world just ended.”
• Cheryl said she “immediately felt protective of her husband and worried about his reaction.”
• Amanda told us that she was “really angry about the deal life had given them.”

This is all perfectly normal. All of us react differently and different waves of emotion may come and go quite quickly. It takes time for strong or overwhelming feelings to settle down.

For some people it takes a couple of days, for others, weeks. If it takes more than a couple of months and you’re still feeling extremely distressed about the diagnosis, then it is time to get help to work through those feelings. Strong feelings can get in the way of moving forward with dementia. Speak with your GP or access phone or web-based support services.

Different and difficult feelings

If the person with dementia has been diagnosed early in the course of the disease, the sense of loss, grief and sometimes constant worry about the future can be more disabling on your lives than the current symptoms of dementia. Thoughts about plans that may not be fulfilled, or guilt about things that never happened, even anger towards the person for ‘getting dementia’ are common. You may recognise emotions often described as ‘stages of grief’—shock, denial, bargaining, depression, and acceptance. These don’t occur in a neat order, and even after reaching acceptance, other emotions can return.

These worries and feelings may get in the way of taking part in and enjoying activities in your lives. Withdrawing from activities may increase your feeling of sadness or loss and for the person with dementia, actually make symptoms appear worse. Social and mental stimulation is nourishment for the brain! For more information read 3.7 Cognitive therapies and rehabilitation.

Some carers and people with dementia feel embarrassed about having dementia. They worry about the reactions of others. It is important to remember that dementia is a chronic disease, just like diabetes or arthritis are chronic diseases. Dementia is not something to be ashamed or embarrassed about.

Today in Australia it is estimated that around 29,000- 30,000 people are living with young-onset dementia. While almost everyone will have a family member or know someone with a family member living with older age dementia, far fewer have met someone diagnosed before the age of 65, so you may feel more isolated or misunderstood. This can make it harder to find peers who share your experiences, but you are not alone – specialist young-onset dementia services and peer groups can offer understanding and support.

Situations that complicate feelings

Young-onset dementia can bring extra challenges. A diagnosis before age 65 can be more of a shock because dementia is often seen as an older person’s illness and may not have been considered by doctors early on. Symptoms can first appear as changes in personality or behaviour, meaning some people are initially diagnosed or treated for conditions such as depression or anxiety. On average, it takes around 3.5-4 years to receive a diagnosis of young-onset dementia, and for some it takes even longer. This delay can intensify stress and uncertainty by the time a diagnosis is finally given. Many people are still working or supporting a family when diagnosed. Deciding whether to tell an employer, and worrying about job security or income, can feel overwhelming.

A diagnosis of a progressive neurological disease, like dementia, can cause increased stress within relationships. Pre-existing tensions can be magnified; there can be enormous feelings of guilt about leaving or resentment about staying in a relationship. Some types of dementia can reduce the person’s ability to empathise or emotionally relate to you, which can strain even strong relationships. How you see yourself, as a carer or a person living with dementia, and how others see you, may also change. The relationship can shift from a partnership, spousal, or parent-child role to one of a carer, and a cared-for-person and adjusting to this takes time.

If a person with dementia asks that the diagnosis be kept private, carers may feel cut off from friends or extended family who could otherwise provide support.