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Experiencing changes related to dementia may lead to a range of different emotions. Feelings of shock, sadness, frustration, embarrassment, anger and loss are all common when dealing with these changes. Of course, feelings of happiness, pleasure and joy can also be experienced while living with dementia.

It’s normal to feel a range of emotions, and there are ways to find a balance between allowing yourself to experience sadness and frustration and finding ways to feel happiness and pleasure.

Common Feelings

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Living with change – Ted’s poem

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Shock

When you first receive a diagnosis of dementia, you may feel shocked. “Why me?” and “What does this mean?” are common questions people ask themselves. With any major news it’s usual to feel distressed for a time while adjusting to the new information and making sense of what it means.

In time these feelings usually diminish as you understand what dementia is, and find ways to adjust. Alternatively, some people are relieved to have an explanation for the memory issues and other problems they have been noticing over time. They can move on with life knowing the reason for their symptoms and what they are now dealing with.

Anger

Some people feel angry about the changes they are having to cope with. They may feel angry about the condition, angry about memory loss, angry about having trouble with things they used to be able to do easily. It’s natural to feel anger and resentment about these things at times.

Frustration

This is probably the most common feeling expressed by people living with dementia. Having trouble remembering, not being able to do something you used to do, or searching for something you’ve misplaced can be extremely frustrating.

Loss and sadness

It’s also natural to feel sad or upset over the losses you may be experiencing. The loss of abilities, skills or independence can create enormous sadness and may at times feel overwhelming. Sadness that lingers without easing could mean depression. It’s important to talk to your doctor or a counsellor for ways to manage this. Sometimes medication can help.

Embarrassment

Forgetting a familiar face or not being able to find the right word to express yourself can be embarrassing. This may in turn make you feel angry or frustrated.

What to try

All these emotions are very normal reactions to the many challenges and adjustments you’re facing. Everyone has their own way of dealing with their feelings. The important thing is to find healthy ways to cope with them.

Experience the feeling

Allow yourself to really feel what you are feeling, no matter what it is. Denying the feelings and hoping they will go away tends to intensify whatever emotions you’re experiencing. Talking to a trusted family member, friend or counsellor may help. Sharing feelings often helps you to understand them and can help you to feel better. It is okay to cry.

Keep a journal

Some people find expressing their emotions in a private way very helpful. Writing down feelings or recording them can help clarify and make sense of emotions. This can also help you remember things that have happened, or what people have said to you.

Enjoy activities

Doing something you enjoy can be a big help if you’re feeling down. Focus on the things you’re still able to do and enjoy them as much as you can.

Sharing your feelings

Experiencing the changes caused by dementia may bring about a range of different emotions. Having such feelings is very common and it may help to share them. Talk to someone you’re comfortable with and trust. You might also like to join a support group and meet others who have dementia to share experiences and ideas for dealing with the condition.

Maintaining your spirituality

Spirituality is more than religion or going to church – it can relate to anything that gives meaning or brings peace to our lives. For many people, their spiritual faith is an important strength as they learn to live with dementia. Whatever spirituality means to you, it’s important to take time to keep enjoying whatever helps you content and at peace. Whether that comes from maintaining religious involvement, meditation, appreciating art, enjoying a sunset, walking along a beach, or spending time with family/whānau and friends, do it as much as you can.

Laughter is the best medicine

Living with dementia can be difficult and stressful at times. Sharing your sense of humour is an excellent way of releasing tension, as well as enjoying lighter moments with friends and family. Don’t forget to laugh.

Be kind and patient with yourself

There may be times when you’re struggling to remember a piece of information that seems to be vital. Is it worth the feelings of frustration and stress? Try letting it go and focusing on something else. You’re experiencing changes that are not your fault but are part of an illness. You may just need more time to do or remember things, so try to be patient with yourself.

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    Booklet: Living well with dementia

    A guide for people diagnosed with dementia

    This booklet is written for people who have been diagnosed with dementia to give you information and to help you continue to live well. The booklet suggests ways to look after yourself including how to adjust to change and managing your day, as well as working, driving, keeping involved and active and planning for the future.