Dementia: the worries and fears that people are too afraid to talk about

Dementia is a life changing illness that touches thousands of families across the UK each year.  From the individual who has dementia, to the loved ones, friends and neighbours who may be supporting them, it can often be a very difficult journey.

But families dealing with a diagnosis of dementia should know they are not alone, says Rikki Lorenti, an Admiral Nurse. Here Rikki talks through some of the top fears and worries that family members can feel but are often too afraid to talk about.

“Dementia is a progressive illness and as the symptoms worsen the stress placed on all parties also grows,” said Rikki. “The most important thing families can do is to ensure they have all the support they need and that is available to them.

“Families may go through a whole range of emotions at different stages of dementia, including worries, fears and feelings of guilt, but all these concerns are shared by countless others carers. What is important is to talk about these issues and to understand them.”

‘I find it hard to see mum as I’m terrified I’ll get it too and that’s what I’ll become’

If there is a history of dementia in the family it does not always follow that it will be passed on but with any diagnosis it can allow for the opportunity to plan ahead.

There is a condition called “familial dementia”, which suggests that there might be a possibility that dementia could be passed on due to a faulty gene. If you are worried about this then try to talk about it as a family and consider whether you want to find out if you have there is a genuine possibility. There are genetic testing centres across the UK that can do a test, one being the National Hospital at Queens Square, but in the first instance you should talk to your GP about your concerns and they will be able to refer you if necessary.

In the case of vascular dementia, if there is a family history then consider making some lifestyle changes, such as: follow a Mediterranean diet, try and eat less fatty foods, give up smoking, moderate your alcohol intake and take regular exercise. This reduces the risk of stroke which in turn reduces the risk of developing a vascular dementia. For rarer forms of dementia, such as Frontotemporal dementia, consider making contact with the rare dementia support group at the National Hospital.

Ultimately the decision is yours, but with early detection and by making use of all the support that is available, you can plan ahead and make those vital decisions. For more advice visit Alzheimer’s Research.

‘I find it hard to see him as there’s nothing left of my Dad anymore’

You are probably correct if we are looking at the situation in the ‘here and now’, but by going back into your father’s world it may be that some of his personality will still be evident. You can go into his world by focusing on where he is. If he is in 1950, then refer to music from 1950, look at pictures of 1950, plan an activity that looks at the events of 1950 and find familiar items that are from 1950. Any response you get, even if it is just for a short moment, should be cherished. You may also find he responds to touch and is fascinated by sounds. It is worth reflecting that you, as the carer, may need to focus on what your father was, rather than what he is now.

To hear the insights and personal experiences of others who have been in a similar situation, take a look at Dementia Diaries. The UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. And for more information about how music can connect with those with dementia, visit Music Mirrors.

‘I don’t know what to say to her’

The answer to this is that you don’t need to say anything. If the situation doesn’t require communication then use the time to listen to music together, or read a book to her. This will be just as beneficial, if not more so, than having a discussion.

But if she wants to talk, for example about her dementia, then let her. Try and counteract any negatives with a positive and to pick up on what has been achieved rather than what is lost. If a discussion becomes potentially distressing then consider using distraction techniques that are specifically linked to her interests.

It may be that in some cases you may feel you have to lie, which is commonly known as “therapeutic lying”. It is called this as any intervention that reduces anxiety and distress could be seen as beneficial.

‘The children are scared to see him’

At a Dementia Friendly Barnet event I recently attended it was clear that we need to start raising awareness of dementia within the education system, so that we can start breaking down the myths surrounding dementia, but also create a support network for children and young people.

Remember every child is different. I recently had a situation where a family was coming to terms with a father receiving a dual diagnosis of MND (motor-neurone) and FTD (frontal-temporal dementia). One child within the family was happy to discuss it, whilst the second did not want to talk about the situation.  Working with the family, we felt there were two strategies (1) wait for the child to open up and start discussing rather than forcing the subject or (2) encourage the school and their peers to provide support.

As a starting point, Alzheimer’s Research UK has launched a new website, ‘Dementia Explained’, aimed at helping children and teenagers to understand dementia, how it affects someone and how this could impact their lives.

‘I love him but I can’t cope’

Anyone caring for a person with dementia needs the opportunity for respite and time away from their role as a carer. You do love him, but like all relationships you will have rough patches. There is a need for all family carers to have time out, to be able to pursue their own interests and to find a network that will listen to their needs and support them. You must remember you are not alone and make sure you have that support in place.

If you have a question about dementia, please call the specialist team here at SweetTree on 020 7624 9944 for an informal chat.