A parliamentary debate on the Scottish government’s ‘national conversation’ to inform the nation’s fourth dementia strategy heard calls for better access to post-diagnostic services, addressing the postcode lottery and better support for the social care workforce. But leading Alzheimer’s and dementia charities say the government must also learn from past strategies and take action to deliver on its past promises.

Last week, parliament held a debate on the Dementia Strategy, discussing the essential role that lived experience perspectives play – and the challenges remaining to delivering on Scotland’s dementia strategy.

The number of Scots currently living with dementia is around 90,000 and forecasts suggest the number of people for whom dementia will be the primary underlying cause of death will be three times higher by 2040.

Speaking in parliament, Minister for Mental Wellbeing and Social Care Kevin Stewart said there was a “clear appetite” from stakeholders for a new strategy and that co-production with a lived experience panel was central to the process.

Mr Stewart said he is working with this panel to “develop a new story” for dementia policy in Scotland, building on “world-leading commitments” to improve dementia care and support. He explained that this has been an ambition since 2007, adding:

“Since then, dementia services have been transformed, thanks to excellent contributions from staff who work across health and social care and the public, third and independent sectors.”

He said developments have been driven by prior strategies and now estimates show IJBs will have spent £2.6bn on dementia this financial year, an increase of 13% over the past nine years.

The minister told parliament that beyond Scotland’s previous strategy ambitions, new priorities have emerged:

“In addition, we have had a focus on modernising specialist dementia national health service care and, more recently, on supporting the brain health agenda.”

Alzheimer Scotland responded by questioning the true level of progress. The charity’s Director for Policy & Practice, Jim Pearson, pointed out that many of the issues that were raised in previous strategies remain challenges for people today. He said:

“Alzheimer Scotland supports the development of a fourth dementia strategy for Scotland. However, as we said in our response to the consultation, the Scottish government has not yet delivered fully on the commitments of the previous three national dementia strategies.

“Those previous strategies were also informed by national dialogue and reflected the experiences of people living with dementia and carers. They included collaboratively developed solutions and policy commitments to address many of the same issues and challenges that people living with dementia and their families face today within our communities and our health and social care system.”

Outstanding commitments

Mr Pearson added it is vital that the new strategy actually delivers on the government’s earlier commitments:

“While we acknowledge that there are new emerging issues, and a changing context, it is critical that the new strategy delivers and builds on the Scottish government’s previous promises to those living with dementia in Scotland.”

During the parliamentary debate, concerns around delivery were raised by several politicians, with SNP MSP Marie McNair saying the strategy must address “gaps between policy and practice”, the postcode lottery in service provision as well as workforce and training issues.

Ms McNair added that the trauma of diagnosis is not well supported and the government must build on its “track record” of dementia support and improve the assistance offered and provision of services.

Scottish Labour’s Carol Mochan called for the government to “deliver on its commitment to remove all non-residential care charges”, echoing a call from the Health and Social Care ALLIANCE which recently urged the government to fix a date for ending these care charges.

Ms Mochan said that well-funded service and well-paid carers are essential, and highlighted the importance of allied health professionals’ (AHPs’) early intervention. She said AHPs support self-management and more must be done to avoid a postcode lottery in access to AHPs across Scotland.

The parliament heard Scotland must ensure there is a good foundation of support with the number of people living with dementia in Scotland set to rise by 50% in the next 15 years.

Scottish Green MSP, Gillian Mackay, said:

“We need to establish now how we will continue to support people, and we need to plan how to staff services to ensure that we have an appropriately qualified workforce in the coming years. It is helpful for people to know who is at increased risk before they experience symptoms of dementia.”

She added that while genetically testing all Scots may not be viable, more dementia research is needed to understand the risk factors associated with different types of conditions.

After diagnosis

Age Scotland’s Head of Dementia, Dr Kainde Manji, says while the charity welcomes parliament’s debate and cross-party support, the current state of post-diagnostic support must be addressed:

“It is unacceptable that less than half of those newly diagnosed with dementia in 2019/2020 were referred for their ‘guaranteed’ year of post diagnostic support. Ten years on from the introduction of Self-Directed Support it is not good enough that people living with dementia are consistently denied the opportunities to access and direct much needed social care.

“The new strategy must learn from those published before, as well as meeting the challenges of today. Most importantly it must listen to the voices of people living with dementia and unpaid carers.”

Gillian Mackay MSP had shared this sentiment in parliament, saying person-centred support must be offered once someone is diagnosed.

Scottish Labour’s Paul Sweeney told parliament that more work must be done to better understand and improve access.

Last year, healthandcare.scot heard about the importance of voices of experience in developing dementia care, with a call for post-diagnostic support to be available when most needed for an individual – instead of only the year following diagnosis.

Ms Mackay highlighted the vital role of Age Scotland in supporting people, awareness-raising and developing understanding of the challenges people face – adding that the those who are caring for people with dementia must be adequately supported too.

As Head of Dementia for Age Scotland, Dr Manji said:

“The Scottish government have rightly recognised the vital role played by grassroots community-based organisations in providing support to people living with dementia during the pandemic as well as their commitment to invest in new approaches through their £1m investment in Age Scotland last year. The new strategy must build on this approach to ensure that this becomes a sustainable and resilient model in the longer term.”

For building a more sustainable service, Scottish Labour’s deputy spokesperson on social care Paul O’Kane MSP suggested an amendment to the dementia strategy that recognised the current NHS workforce challenges, the need for increased availability of care packages. He called for an immediate pay increase to grow the social care workforce.

Minister for Mental Wellbeing, Kevin Stewart acknowledged the need for continuing work to increase resources for care workers:

“If we are to ensure that we have the right care system for the future, we have to go further on pay and conditions.”

Despite this, Labour’s amendment to the debate motion calling for an immediate increase in social care pay to at least £12 per hour, and a plan to increase pay to £15 per hour by the end of the current parliamentary session, was voted down.

Read more: Music's potential to help with dementia; Insight: Care homes embracing technology; Voices of experience key to dementia care

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