Care & support must be guaranteed for all those with dementia

By Jim Pearson, Deputy Chief Executive of Alzheimer Scotland

FOR anyone given a life-changing health diagnosis, it is only right that they receive the proper care, treatment and support as their condition progresses.

But for people diagnosed with dementia, too often we hear that’s not the case and that many are left to learn for themselves how to live with what is a progressive, terminal condition.

While illnesses such as cancer, chest, heart and stroke all have clear pathways mapping out exactly how a person will be treated and cared for at every stage – dementia has no such pathway in place. There is often no offer of regular care reviews or annual check-ups with health professionals.

TV presenter Fiona Phillips has courageously shared her experiences of living with young onset Alzheimer’s disease, having been diagnosed at the age of just 61.

Chance of a cure

Her new memoir, written with husband Martin Frizell, gives a moving account of the huge impact dementia has had on their lives.

One of the most poignant elements of their story was when Martin described how, after being given the diagnosis, he and Fiona were “left to cope alone”. Had his wife been diagnosed with cancer, he said, “she might have had a chance of a cure and certainly would have had a treatment pathway and an array of support and care packages.”

Fiona and Martin are sadly not alone in such an experience, and it is further proof that dementia is not treated as a priority by health and political leaders.

Just this week we were delivered another blow when regulator the Scottish Medicines Consortium decided that promising new dementia drug lecanemab – for those in the early stages of Alzheimer’s disease – would not be made available on NHS Scotland.

This is just the latest in a series of decisions by regulators across the UK who have consistently refused to recommend promising new dementia drugs for NHS use, arguing they do not provide value for money.

It is time for a new approach to assessing these drugs if we have any hope of tackling this illness.

We need to establish an innovative dementia drugs fund that can move treatments like this into clinical practice.

At Alzheimer Scotland, we believe no one should face dementia alone and that people like Fiona and Martin deserve to have hope.

This means giving people access to potentially life-changing new drugs, and also ensuring they have the right care and support following a diagnosis.

But achieving this seems more difficult than ever. Vital health and social care services supporting tens of thousands of people living with dementia, their families and carers are quietly being earmarked for closure and severe reductions in some of the most extreme cuts ever seen.

The decisions are being made by Integration Joint Boards (IJBs) who control health and social care spending in each local authority area. This means that dementia care provision can differ significantly from one local area to the next.

Among the areas worst affected by proposed cuts are care at home, respite and day care services, which provide lifeline support to people who are in a moderate to advanced stage of their illness.

One year’s support

Post diagnostic support services are also under pressure in some areas, despite a world leading commitment in Scotland that every person diagnosed should receive a minimum of one year’s support.

Alzheimer Scotland has launched a campaign to stop these cuts, which would decimate community dementia care across the country.

We’re calling for a guaranteed national pathway where evidence-based interventions are offered to everyone with a dementia diagnosis throughout the progression of their condition – every time, everywhere throughout Scotland.

There should be no doubt what you will be offered as you go through your time living with dementia. It should not be left to local commissioning decisions to be made purely based on how much money is left in budgets.

Dementia is the UK’s biggest killer, and the leading cause of death for women. More than 75,000 people die from this disease every year – we must act now to make it a priority and to provide the right care, treatment and support to all those who need it.

This article was originally published in the Scottish Sun on 14 July.

Find out more about Alzheimer Scotland’s campaign to Stop the Cuts at www.alzscot.org/StopTheCuts