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Why dementia causes big changes in relationships

A dementia diagnosis often means that ‘normal’ roles change; sons and daughters become carers for their parents, reversing their lifelong roles, whilst partners cope with an increasing amount of dependency from the person they’ve always considered their equal. These role changes can place a huge emotional strain on your relationship with the person who has dementia.  Many family carers find these changes harder to cope with than any of the practical challenges they face on the dementia journey.

He’s not my husband anymore

You’re losing your best friend. He’s the person you’ve shared your life with. Together, you’ve been through good times and bad, but now shared memories, intimacies and mutual understandings are fading away. In their place are practical duties and demands that are increasing rapidly.

She’s not my mum – I’m the parent now

She was the person who gave you life, the first person you called when you needed advice, a shoulder to cry on or just someone to talk to. Now she often looks at you with a vacant smile. Sometimes she just looks scared.

5 ways dementia starts to change your relationship:

1 – The person you love forgets a special occasion

A birthday or anniversary goes unnoticed. A favourite memory is forgotten. A private joke you used to share means nothing anymore. Little things mean a lot in long term relationships, and their absence can leave a hole in your relationship (and your heart) that’s hard to fill.

2 – They become more dependent on you

You may be able to cope with the many day-to-day practical tasks. Then you find yourself doing something they used to do for you, such as styling their hair or helping them brush their teeth….and suddenly you realise how much has changed.

3 – They say cruel things and/or become aggressive

Dementia can cause delusions, hallucinations and paranoia all of which could lead the person you love to behave in a way that’s really distressing, verbally or physically.  For example, you might find yourself accused of stealing money or trying to poison them. They may even lash out and become aggressive. You will probably find ways to cope with all of this because you love them, but it will still hurt.

4 – Their personality seems to change

Family carers sometimes feel as if the person they love has undergone a personality transplant; someone who used to be shy and retiring can become more extrovert, someone who used to be impatient can become calmer. But even if the changes make them easier to care for, they can be sad and unsettling; another sign that the person you used to know has changed fundamentally.

5 – They forget you

This, of course, is the moment everyone dreads. If it happens (it might not) it can stir all kinds of difficult emotions and feelings of grief and loss; for the person you love and the relationship you used to have.

 How you might feel:

  • Angry – this is not how it’s meant to be – it’s so unfair!
  • Sad – I’ve lost them

 What can help:

Acceptance – even the most upsetting behaviour isn’t deliberate, it’s a symptom of their illness. The person you know, would not behave like this.

Focus on the positives – you may have lost some of the experiences you used to treasure, but you might still be able to find some common ground. For example, watching a film or doing a crossword together might be out, but going for a walk or listening to some favourite music may still be possible.

Share how you feel – the only people who really understand how difficult these relationship changes can be to deal with are those who are going through something similar themselves. The Unforgettable Dementia Support group has more than seven thousands of like-minded members who share their daily experiences (good and bad) with searing honesty.