Living with dementia can be a big adjustment. Dealing with the changes can be hard. Many people report feeling shock, sadness, frustration, embarrassment, anger and a sense of loss. For some people, getting a diagnosis can be a relief as there is an explanation for problems they, or other people, have been noticing over time.
People with dementia also experience happiness, pleasure and joy. It is normal to feel a range of emotions. There are ways to find a balance between allowing yourself to experience sadness and frustration and finding ways to feel happiness and pleasure.
“Kia kaha, tu tika, stay strong, stand tall. Aroha and āwhina shared by us all.”
Living with change – Ted’s poemRead Ted's story
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.
It is usual to feel distressed for a time while adjusting to the new information and making sense of what it means. These feelings usually diminish with time as you understand what dementia is, and find ways to adjust.
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 and fear
You might feel angry or fearful about the changes you are having to cope with. You might feel angry about having dementia and angry about memory loss.
People also fear losing independence when having trouble with things they used to be able to do easily. It is natural to feel anger and resentment about these things at times.
Frustration is probably the most common feeling expressed by people living with dementia. It can be extremely frustrating having trouble remembering, not being able to do something you used to do, or searching for something you’ve misplaced.
Loss and sadness
It is natural to feel sad or upset over the losses you may be experiencing. The loss of abilities, skills or independence can create sadness and may feel overwhelming at times.
Feelings of hopelessness, sleep problems and loss of enjoyment over weeks and months could mean depression. It is important to talk to your doctor or a counsellor for ways to manage this. Sometimes medication can help.
It can be embarrassing forgetting a familiar face or not being able to find the right word to express yourself. 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 someone else who has dementia is invaluable. People with dementia often understand better than others as to what it is like to live with dementia. 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 your 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.
Doing something you enjoy can be a big help if you’re feeling down. Focus on the things you are still able to do rather than what you
cannot do. Ask for help when you need it to guide and support what you want to do.
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. Join a group and meet others who have dementia to share experiences and ideas for dealing with the condition.
Te oranga wairua – spiritual wellbeing
Spirituality/wairua relates to all that gives meaning or brings peace to our lives. For many people, spiritual faith is an important strength in
learning to live with dementia. Take time to experience what helps you find meaning and a sense of peace. Examples are karakia, maintaining religious involvement,
meditation, being in nature, art, music, and spending time with whānau, family and friends.
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. Remember to laugh at some of the unintentional things you may do. Be kind and patient with yourself It is alright to forget things. It is alright to have things go out of your head, or not remember where you put stuff. Sometimes it helps to focus on something else for a while, and you will remember later.
These changes are not your fault but are part of an illness. You may just need more time to do or remember things, so be patient with yourself.
Doing one task at a time
Try and only do one task at a time and not get distracted until the task is completed. The changes due to dementia can lead to being easily distracted and tasks not being completed.
Having a purpose
Everyone needs purpose but having dementia can make it difficult to participate in activities and roles which previously brought pleasure
to life. Ask for help to carry on usual activities and roles as necessary. There will also be opportunities to share experiences and activities with the support groups offered by Alzheimers and Dementia organisations.
Booklet: Living 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.