Scots dementia patients facing 'postcode lottery' care

In many areas this is provided by Alzheimer Scotland’s Dementia Link Workers on behalf of health boards, while in other areas, support is provided by NHS staff

Alzheimer Scotland say that in order to live well, people who are newly diagnosed with dementia need support to understand the illness and manage symptoms and plan for the future.

However, the charity estimates just 50 per cent receive this due to a shortage of workers.

Data obtained by The Herald shows support varies depending on where you live and the pandemic has led to increased waits. In one health board 44% of patients were waiting to be designated a link worker, while in another of a similar size, 72% were being supported although the patient numbers were considerably smaller.

Freedom of information figures have also given a snapshot of diagnosis waits across Scotland with some people waiting more than six months to find out if they have the disease.

Alzheimer Scotland say great strides have been taken in dementia treatment over the past ten years - Scotland is considered world-leading in many areas -  but say the gap between policy aims and real life experience is still too wide.

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NHS Greater Glasgow and Clyde, which is Scotland's biggest health board, said 1807 people were diagnosed with dementia from January to September, figure that is likely to be considerably higher due to pandemic backlogs.

The board said 118 were discharged from the service for various reason and of the remaining 1689 patients, 908 were assigned a link worker, with 771 (44) still waiting at the time the Herald received a response.

In Lanarkshire, of 421 patients diagnosed with dementia this year  72.45% had been assigned a link worker, and more than a quarter (27.55%) had not.

NHS Lothian  said of 601 patients diagnosed between January and June 2021 only 30 had not been assigned a link worker. In Ayrshire, 509 out of 601 people newly diagnosed with dementia had been assigned a support worker while in Tayside, 204 patients had been allocated help and the health board said none were currently waiting.

NHS Highland said 217 people were assigned a worker but the board was unable to say how many newly diagnosed patients had not been offered support.

Grampian said it did not hold the information while Dumfries and Galloway said anyone diagnosed with dementia was "automatically assigned a worker" although the board did not provide any figures. NHS Shetland said 22 patients out of 25 had received dedicated support.

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NHS Borders said six patients have been waiting more than six months for a diagnostic test and said all patients were allocated a support worker within two weeks of being referred to the service.

Alzheimer Scotland would like to see link worker support extended beyond a year.  Those who are diagnosed with dementia at a later stage are entitled to support from a named Dementia Practice Coordinator, from that point until the advanced stages of the illness.

The data also shows patients in some board areas are waiting more than six months for investigative tests to confirm if they have dementia.

Many health boards including Glasgow, Lanarkshire, NHS Ayrshire and Arran, Grampian said they could not provide the data because of the cost of retrieval. Orkney's board said it was unable to provide the information requested but said all patients were assigned a link worker.

NHS Highland said 105 people were waiting for tests up to June 2021 and of those 29 had been waiting more than six months.

Lothian said 415 people were waiting for a memory assessment, which detects cognitive decline and dementia. Of those 48 (11.6%) had waited more than six months to find out if they have dementia.

NHS Tayside said no patients with suspected dementia had waited six months or more for investigative tests while six patients in Dumfries and Galloway were waiting six months or more.

Jim Pearson, Director of Policy & Practice at Alzheimer Scotland said: "“The importance of an early diagnosis and high quality, personalised post diagnostic support for people with dementia and their families cannot be emphasised enough. 

"Scotland has led the way, however, we know that fewer than half of those people diagnosed have received this essential support. 

"This has been further exposed during the pandemic where diagnostic and post diagnostic services were severely disrupted for many. 

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"Alzheimer Scotland have been vigorously campaigning to ensure everyone who should receive this critical support is offered it. 

"To their credit, many local areas have strived to do so with limited resources. 

"It has always been our view that national investment was required to support local areas to deliver on this commitment, therefore we are delighted the Scottish Government has announced an additional national investment which we hope means that everybody who needs it has access to this vital support.”

NHS GGC said in its response: "Due to staffing pressures during the first wave of the pandemic, the allocation rates for link workers as part of post-diagnostic support (PDS) unavoidably dropped. 

"Rates of making a formal diagnosis of dementia, required for PDS, were also reduced during this time due to memory assessment clinics being suspended. 

"Subsequently, as memory assessment clinics became operational again, there was a surge of newly diagnosed patients to allocate to PDS. 

"Arrangements are in place to manage this backlog and PDS services are working hard to support those individuals diagnosed since the start of the pandemic."

NHS Forth Valley said it did not hold any of the information requested by The Herald and NHS Borders and Orkney did not receive the request in time for this article.

The Herald is backing Alzheimer Scotland's campaign for fairer care costs for people with advanced dementia