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Dementia awareness - The ripple effect on families

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This week is dementia awareness week and here Bromford colleague, Sally Alder, highlights that dementia affects not only those living with the condition, but their wider circle of friends and family too.

As a young man George* was aware of the fate that might have been in store for him. His mother had Huntington's disease and had lived with dementia from when she started displaying symptoms in her late fifties until she passed away ten years later.

George had a 50% chance of inheriting the condition from his mother but at the time there was no way of him being tested.

Sadly his father passed away soon after his mother leaving George and his two siblings with the knowledge that they too may suffer the same fate.This was quite a burden but he made the most of his opportunities and had a successful career and met and married a woman prepared to face the future with him.

Together they decided to have children and by this time testing for the condition had improved. They were able to have testing during pregnancies which if positive gave them the option to abort the foetus. Fortunately they had three children –none of whom had the defective gene which gave them hope that George might also be clear.

Sadly this was not the case and he started exhibiting behaviour such as uncontrolled temper, unreasonable expectations of the children and was very intolerant and unable to cope with family life. This led to the diagnosis they had dreaded when the children were still quite small.

The effect on the family has obviously been devastating. The children struggle to remember their daddy when he was well. He had been an inpatient for many months following a couple of psychotic episodes and has had to leave the family home to live separately with a carer.

The condition has had a divisive impact on the whole family, causing fall-out for his wife. Her brother and sisters and their children have all been affected as they have shared holidays, Christmases and Easters with them. There is also the guilt of how often they can see him and how much they can do to support the children and their sister. It has been horrible to watch the decline of someone who was so bright and capable to someone who looks vacant and sometimes troubled.

The children have at times struggled to cope with their daddy and were sometimes embarrassed by his behaviour which was hard to see. Now that they are older and George is settled in his current accommodation the children are coping much better but they still have a long path ahead as he has not reached the full decline of his mental faculties -which will also be heart breaking to see.

This family, their immediate family and their friends have been struggling with this condition for 12 years. It has impacted every aspect of their lives, friends who cannot cope have drifted away, a wife became a carer and single mother who cannot move on and find a new partner whilst still married. As well as the emotional strains, there have been wider family tensions over his care too. Financially they have managed as his work place were fantastic, giving him a good pension which has helped.

It strikes me that dementia, whatever the cause is like a stone in a pond. The worst effect being at its centre but the ripple effect impacts on everybody for a long time to come.

The individual affected is part of a wider circle and it is important to remember that and not judge families when they appear jaded by their relative because this is a cruel condition that robs people of someone they love and the very essence of who they are.

*Name changed