When a call can make all the difference to coping with dementia

Statistics show that one in three of us will be affected by dementia at some point in our lives. Many families of those with dementia often find it hard to know where to turn.

Here, Janet Roberts, of the Wales Dementia Helpline, outlines the role the team can play in providing support to those affected by the condition

COMING to terms with a dementia diagnosis can be difficult for the person newly diagnosed, but it also affects the whole family.

While families want to support the person with dementia, they can also be fearful for the future and sometimes doubt their own ability to cope.

The helpline will support the person with dementia, but also, and equally as important, will support the family carers to enable them to carry on with whatever role they play in the person’s life.

Launching a service is just one part of the process – if no one knows you exist, then they cannot use you.

Awareness raising is a key part of the service.

We started by sending information leaflets to agencies that were likely to come into contact with people needing support, as well as access to information on what services were available to them.


The agencies contacted included every GP surgery in Wales as well as both statutory and third-sector services who were working in the health and social services field.

The second phase of awareness raising targeted agencies that may come into contact with families through their work who would benefit from the service provided.

One question we get asked a lot is what type of calls do we get?

The answer is all types, ranging from “I think I have dementia, how can I find out for sure?” to “I am worried about my neighbour, they go out and forget to close their front door”.

Sometimes the help asked for is of a practical nature – such as what benefits should I be claiming, what adaptations can I make to my home, who can help with caring responsibilities?

Some callers, especially someone caring for a wife, husband or parent may just need someone to talk to about the difficulties they face on a day-to-day basis.

They want to carry on caring, but still need to be able to talk to someone when times get difficult.

And quite often they don’t want to burden other family members with their problems or feel disloyal to the person they are looking after if they complain about the impact their caring role has had on their lives.

Through the helpline, they can talk about their own feelings, how they miss their lives before dementia was diagnosed and also the loss of hopes and dreams they had for their future.

They can be honest when they talk to the call takers on the helpline because its anonymous.

They don’t know us and we do not judge them.

We understand that the most dedicated family carer also needs some time and space to express their frustrations and fears.

Caller A rang from outside Wales seeking help as his father lives some distance away from him in Wales.

The caller had no idea what services were available to help his father continue to live at home.

He was ringing mainly for information, but it was soon apparent how devastated he felt.

He expressed his fears in not being able to give his father what he wanted, to remain in the home he had lived in all of his married life and how he would feel if he had to make the decision for his father to go into residential care.

His main worry was letting his father down in some way, but not sure what he could do when he lived so far away.

Our response: It would be easy to handle this call purely as a request for information on local services, but our call handlers know that behind the most practical and calmly delivered questions can be a turmoil of emotions.

We provided the information the caller needed and then asked how he was coping with the diagnosis.

This tends to open the floodgates to all those emotions, concerns and even guilt, often misplaced guilt.

But while the focus of concern is naturally on the person who now has to live with the diagnosis, it is important that we also allow the person ringing the time and space to express their own feelings about the situation.

Caller B initially rang to find out what additional support was available to help her care for her husband as she felt she could no longer carry on alone.

The couple were in their late 70s and her husband was reluctant to accept that they needed help.

She was upset that she no longer felt able to cope.

And she was worried about upsetting her husband, who was becoming frustrated and angry with her.

Our response: Callers like this need to be listened to and reassured.


This caller felt she was being asked to carry on a caring role when she herself was struggling.

She needed the time to talk through her own feelings about the situation.

But she also needed to talk about how she could encourage her husband to accept that they both needed support, and that this was not only about his situation and his needs.

To enable his wife to carry on caring for him, she too needed help and, at times, some respite and time for herself.

Caller C rang in regard to his mother who had suffered memory loss.

They were concerned about planning for the future with regard to her will and other legal matters and wanted specialist advice to deal with their particular situation.

Our response: We were able to give the caller the contact details for an agency that could help.

This was a straightforward information call, no high emotional content, just someone wanting to know who could help and we were able to respond with factual information.

Sometimes the helpline has to deal with callers who are very emotional, highly distressed and need time and reassurance to express their concerns.

Other callers have dealt with their emotions and have moved on to trying to help with practical day to day issues.

Each of them is coping in the best way they can.

Neither are wrong – we all do it differently.

But we hope that no matter what the situation, or whatever the need, we have helped them along the way and that after calling, their situation is improved.

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