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TOPIC: Dementia are we making progress or is it old news?

Re: Dementia are we making progress or is it old news? 2 days, 21 hours ago #16

The helpline service is part of the National Dementia Vision for Wales and was launched by the Health Minister nearly a year ago. The helpline clearly sets out the Welsh Government vision to enable anyone in Wales to access both emotional support and information on available services, 24 hours a day, 7 days a week. The service operates a 0808 808 telephone which is free to use from landlines and also the majority of mobile telephone networks. The quality of the sign posting we offer to callers is very important to us and a lot of work goes into ensuring that the information we provide has been checked for accuracy, is relevant and up to date – none of our call handlers would want to get a call back saying the number you gave is wrong or the service has moved.

We see ourselves as a link between the people who need help and support and those agencies offering treatment and support services – we match them up and ensure that they know they can come back to us if their circumstances change or the help they need differs in the future.

Agencies link their clients into us for emotional support to cover the times when they may not be available. Many services can only a Mon – Fri 9 – 5 service, so we become part of the care available by covering the out of hours needs of clients ensuring they feel safe and supported at all times.

Re: Dementia are we making progress or is it old news? 2 days, 20 hours ago #17

In my experience some callers, particularly elderly carers, either through pride or guilt at feeling they have "let down" a loved one don't feel that they can or should ask for help. They often leave it until crisis point to call. Our role is to reassure them that they have been coping, that they have done the right thing in ringing us and we will help them access extra help of the type they feel they need. We also encourage carers to look themselves so they can continue to support for their loved one. The most helpful tool we have is our database of agencies across Wales that we can signpost callers onto – we have both statutory and third sector so can usually find the right service to fit the callers’ needs. Many callers comment on how glad they are that we are here for them 24/7 as some find it is late at night or early hours of the morning when they worry about what has happened that day and what happen in then future.

Re: Dementia are we making progress or is it old news? 2 days, 20 hours ago #18

When people call up they often have just had their family member or friend diagnosed with dementia/AD and they are stunned at this and really have no idea where to go or what to do with this new development. We listen to their story and refer to the best service that we think will support them, practically e.g. finances, power of attorney etc or local emotional support e.g. carer groups, memory cafe etc. I think callers appreciate the time we can offer them to grieve for the loss of the person that they knew and the space to focus on their needs; even just during the time of that telephone conversation – it is an important part of what we offer. Being here for them 24/7 is of great benefit, they know that they are not alone.

Re: Dementia are we making progress or is it old news? 2 days, 20 hours ago #19

I feel often relatives are forgotten about. It so important for them to be supported by all means available. Being responsible for looking after a relative or friend who have Dementia or end of life needs is very stressful for family members. Often the care is centered on the patient, though we must not forget that if family is not catered for then the patient care will suffer. Carers become tired and unable to cope and possibly all that’s needed is a couple hours break or sitters at night. We all know lack of sleep can make situations get blown up. My favourite saying is treat people how you would treat loved ones and you will never go wrong. Usually if we get things right because you would only want what’s best for them. More progress would be made if we take into consideration both the patient and the carers needs.

Re: Dementia are we making progress or is it old news? 1 hour, 5 minutes ago #20

In terms of JRF’s priorities for dementia, our long-term aim is that the UK is a good place for those of us who have dementia to live, and live well.

We want to help achieve that aim through inspiring change in how people and places understand and respond to dementia, so that those of us who live with dementia are more included, connected and supported.

Our focus for our work deliberately moves away from a focus on formal health and social care services or from broader social research on dementia. So, the core questions we want to explore through this programme are:
• How does society as a whole need to change to support the growing numbers, diversity and aspirations of people affected by dementia? (More of us will get dementia, be diagnosed sooner, and live longer in our own homes and communities.)
• How can our local communities change to be better places for people with dementia to live well?
• How can our own organisation be part of this societal shift, and part of making York a dementia-friendly city?
• How can people with dementia better connect with and support each other, so their experiences can shape policy, practice and attitudes?
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