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2.1 Your emotional reaction to the dementia diagnosis

Coming to terms with a diagnosis of dementia is a key step in moving forward

 

Your emotions and dementia diagnosis

Deborah described ‘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”. 

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

Carers often describe strong emotional reactions to being told the diagnosis, ranging from relief, to anger and fear. 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 emotions they felt. Some felt relief.  We all react differently and all of these reactions are normal. 

Your feelings are likely to change and It can take time for feelings to settle down.  If it takes more than a couple of months and you’re still feeling extremely distressed about the diagnosis, it’s time to get help to work through those feelings. Strong feelings can get in the way of moving forward with dementia. 

The Alzheimer’s Association explains different stages of acceptance for carers. 

Supporting someone with dementia can bring up difficult feelings

If the person with dementia was diagnosed soon after they or you noticed changes, the sense of loss, grief and worry about the future can be more disabling than the symptoms of dementia.  Worries and feelings may stop you from taking part in, and enjoying, everyday life. Withdrawing from these activities may make your feelings worse. Keeping in touch with others and keeping your routines going may help you and the person you support.  Read more about Helping the person you support to keep going out and socialising with others.

Some carers and people with dementia feel embarrassed about having dementia. They can be reluctant to tell others about it as they worry how people will react.  It’s important to remember dementia is a long term condition, just like diabetes or arthritis. Dementia is not something to be ashamed or embarrassed about. Today in the UK around 850,000 people have dementia. Almost everyone has a family member, or knows someone, living with dementia.

Start your own dementia toolkit
Clicking here will open the toolkit information page where you can learn how to create your own dementia toolkit.

Situations that can complicate feelings

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

  • Being a younger person when diagnosed which can be more of a shock.  Dementia is often thought of as an older person’s condition A dementia diagnosis can help you adapt
  • Worrying about telling employers and potentially losing a livelihood which can be distressing. 
  • Being in a difficult relationship can make dementia trickier to manage. Marriage issues, difficult relationships between parents and adult children, substance or other abuse in families and other common issues can all make supporting someone more challenging.  
  • Having some types of dementia which reduce the person’s ability to empathise with or emotionally relate to you. This can challenge relationships and affect your feelings 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 be isolating. Find suggestions for telling others about a dementia diagnosis Talking about dementia 
  • Living a long way from a relative or friend you want to support. 

These are common situations and you are not alone. You may need help finding ways to support the person that work for you both. However, the important first step is to find ways that you are comfortable with to work through your feelings.  

 

Working through feelings is a positive step to accepting dementia

Things you can do come to terms with your feelings include: 

  • Let your feelings out. Keeping your feelings in may make you feel worse. It is OK to cry.  
  • Your feelings may change day to day – As a carer you may have good days and bad days.  Take one day at a time.  A bad day might be better tomorrow and take positives from your good days.  Try to focus on what made you feel good or what worked well. 
  • Accept your feelings. Know there is no ‘right’ way to feel. Some carers may have thoughts they feel are unacceptable, such as anger or resentment toward the person with dementia. You are not alone, these thoughts are quite common.  
  • Talk about your feelings. Talk to someone you know and trust or to a trained professional. Talking to a Dementia Adviser  or an Admiral Nurse can help you to speak openly about sensitive feelings you might not want to share with others (such as feeling angry with the person with dementia, feeling ashamed or inadequate). Talking with another person can help put your thoughts and feelings into perspective.  
  • Write your feelings down. Some people prefer to work through worries and feelings by writing them down. You can try writing a diary, a letter to your future self or letters to other people (that are not intended to be sent) as a way of releasing anger, frustration, guilt, and distress. Getting thoughts and feelings out of your head and down on paper can help you to understand them more clearly and feel more in control.  

Talk to family and/or friends about your feelings 

Share your feelings about dementia and talk through the reasons for your feelings. 

Write down your thoughts and feelings about dementia 

Write down your feelings about having dementia in a diary or a notepad. If you don’t know where to start, write a letter to your future self, or someone you love.  

Contact the Alzheimer’s Society telephone helpline: Dementia Connect 

Talk to a dementia adviser and ask about support for you and the person you support

Caring can get you down

Sometimes feelings can be overwhelming if they last a long time and don’t get better. Some carers describe intense sadness, while others said they felt frightened their anger or resentment toward the person with dementia would spill over into actual violence. Some carers have become anxious. Talk to your GP about these feelings. Your GP can help by discussing your feelings with you and can refer you to counselling or other services.  

Carers of people with dementia are at much greater risk of depression than other carers and wives or female partners, are at greater risk of depression than men. Research shows that half of all women caring for someone with dementia experience depression. Symptoms of depression include: 

  • Feeling down or hopeless 
  • Losing interest in things you normally enjoy. 
  • Constant worry or feeling stressed 
  • Feelings of guilt 
  • Crying more than usual 
  • Feeling tired a lot
  • Trouble sleeping. 

Feeling ‘trapped’ by caring or feeling your support is not good enough may increase your risk of depression. Depression is not a sign of ‘weakness’ or personal shortcoming, it is an actual health condition that should (and can) be treated.

For help with depression and/or anxiety: 

  • Talk to your GP or practice nurse about how you are feeling. Your GP can refer you to a psychologist for cognitive behaviour therapy.  
  • Ring Dementia Connect for advice on counselling services
  • You can also refer yourself for “talking therapies”. You can find NHS psychological therapies service (IAPT) in your area.   
  • Private psychologists are also available.  Contact The British Association for Counselling and Psychotherapy  to find more information on therapies in your area  
  • Medications can also help with depression and anxiety. Talk to your doctor if you want to try medication to see if it will help. 

The NHS has some useful tips for boosting your mood.

You can plan to prevent depression

You may be at risk of developing depression when supporting someone with dementia. Doing the following may help you to plan ahead to help you feel more in control and avoid depression. 

  • Creating and maintaining a strong support system 

As dementia is normally a long-lasting condition,  you will need long-term emotional and practical support. Think about who you can call on for support and make a list. Different people will be able to offer different types of support. There may be someone, or more than one person whom you can call regularly and someone else or others who are best to call in an emergency. Here are some suggestions to start you off: 

    • Your family, your friends and neighbours  
    • A dementia or carers’ support group (ask about useful supports others have found) 
    • Healthcare professionals, including your doctor, the person with dementia’s doctor, the practice nurse, occupational therapists 
    • Dementia specialists such as dementia advisors or navigators, Admiral nurses 
    • Social services 
    • Alzheimer’s Society Dementia Connect Helpline  
    • Voluntary services such as Age UK and Carers UK .

      Make a list of their names and telephone numbers and how they might be able to assist. Talk to these people about being part of your support network. You may be surprised about how helpful support for you can be.  Iris kept a list of all her possible support people and their phone numbers at the back of her phone book in case she ever needed it in a hurry.


      Iris said “It gives me peace of mind, I can always phone my daughter, but she has busy teenagers and might not be available. This way I have a back-up plan.” 

  • Plan so you don’t become exhausted
    Use your support system you to help you. You cannot do everything yourself. When you come across a new issue or problem, talk to others in your support system. Ask for help before you become exhausted and learn to accept help when it is offered. This might be hard at first, and you may want to start with something small. Think about taking a break away for a few hours first, then if possible, perhaps, a few days or even a week or two on a regular basis to “recharge your batteries”. 
  • Practice self-care
    Looking after your health and wellbeing needs to be a priority. Make sure you have check-ups with your doctor as required, a healthy diet, regular exercise and enough sleep. You need to do things in life that are good for you and make you feel good.  Try writing down three things that give you pleasure. Pin this list on the fridge as a reminder and make sure you do these on a regular basis.

Keep in regular contact with friends and family. If you can’t do this in person, catch up over phone calls or video systems like Zoom or Skype.

  • Get help with symptom management
    Coping with changes in what the person can do or changes in their personality can be stressful and can contribute to depression. Try to get help in place early to understand the changes in the person and how you can cope with these.  Managing symptoms and changes provides details on managing a range of dementia symptoms.  

Practice self-care 

Write down 3 things that give you pleasure.  Put them on the fridge to remind you to do them. 

Telephone Dementia Connect

Dementia Advisers will listen and direct you to the right support services. 

Talk to your GP 

Talk to your GP about how you are feeling and ask for a referral to a psychologist. You can also ask about whether medications might help you.