Old age, dementia and Covid are a potent mix.

Scotland’s population is getting older with the number of people aged 90 years and over set to double between 2019 and 2043. During the same period, the number of people of working age will decrease. 

Of the 90,000 people diagnosed with dementia in Scotland, 98 per cent are 65 years of age or older. This is not surprising because age is a key risk for dementia. Just over a quarter of the people with advanced dementia are aged 80 years or more. 

Excess death data shows that people living with dementia were disproportionately affected by the pandemic. Unexpectedly high deaths, in care homes and other care settings, raise questions about where and how dementia care is provided. 

It is imperative that we examine what is working well, and not so well, in terms of dementia care and prepare to change. 

Dementia is a term used to describe different neuroprogressive illnesses, such as Alzheimer’s disease, vascular dementia and Lewy body dementia. 

What these illnesses have in common is that they lead to a decline in brain health and, ultimately, a decline in bodily health. 

There is no known cure or effective treatment, which is why dementia prevention is so important. But for people already diagnosed or yet to be diagnosed, we should be concerned about their care. 

This means taking action to mitigate the impact of population ageing on our health and care systems. A future challenge will be the availability of people to provide dementia care. 

Pre-pandemic staff shortages were affecting dementia services and, since the outbreak of Covid-19, these have only intensified.

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Practitioners and providers know there are gaps that need to be filled and there are vacancies across the entire care system.

It is imperative we find better ways to support family carers and help those who can and want to care, while also being mindful of the impact on the carer’s own health and wellbeing.  

UK and international healthcare policies promote services that enable the person to live in their own home. This is because, understandably, most people want to stay in their homes for as long possible.

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It would be naïve to look at dementia care solutions that ignore the major contribution made by family. 

Equally, it would be wrong to say that the family home is always the best place for dementia care.

But when and where it is possible, safe, and the place of choice, we must do more to support and sustain family caring. 

Care needs of people living with dementia change over time with disease progression.

In the early stages of illness, many people, with the right support, live fulfilling and relatively independent lives.

The availability of local post-diagnostic support services, dementia advisors, dementia-friendly community initiatives, resource centres and meeting places all help.

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Over time, as dementia symptoms increase, individuals become more reliant on their family and close friends; often supplemented with care-at-home services, third sector support and services such as day care.    

In the later stages of illness, healthcare needs are complex and palliative. 

Consequently, but unfortunately, the number of options that support family caring begin to narrow.

For example, people with advanced dementia are often discharged from standard day care which is not designed for their complex needs.

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For families who have relied on this, there may be no suitable alternative.

Advanced dementia day care is possible and there have been successful pilots in Scotland – the lack of provision is about the choices in funding.  

 

In the absence of adequate support and practical help in the moment of need, sustaining family caring is a fragile balance between getting by and not coping. 

When things feel impossible, and carers are exhausted, it is no wonder that crisis hospital admission and premature care home admission happens.

If we care, we should be outraged by the inequalities facing people; particularly people living with advanced dementia.

An important question is: what can be done to support family carers, particularly when services are stretched?

Family carer dementia education is something we can and should do. Our national Dementia Care Standards mean local authorities and the NHS must provide people who have been recently diagnosed and their family carers with educational resources. 

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However, written information on its own is only a starting point. Family carers need dementia education and practical skills training, delivered at the right time for them with know-how and sensitivity. 

Sensitivity is needed to support complex emotions associated with anticipatory grief experiences and other psychological impacts.

Trauma-informed approaches to dementia care education are recommended.

In addition to understanding the practicalities of care and caring, families need signposting to navigate care systems, including access to rapid response services.

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(Debbie Tolson)

They also need support to make sense of legalities and finances to protect increasingly vulnerable relatives.

It is well-known that carers need breaks from caring and this requires confidence in the quality and availability of respite services.

Both NHS Ayrshire and Arran and NHS Lanarkshire are delivering a unique carers’ academy model with the Alzheimer Scotland Centre for Policy and Practice team at the University of the West of Scotland.

The model, co-designed with family carers, combines practical care skills education with connectivity to NHS and other local services. 

Importantly, the sessions are tailored to the care challenges and concerns of those attending the session.

Telephone meetings with an Alzheimer Scotland dementia nurse consultant, before and after attendance, troubleshoot and facilitate referrals and urgent interventions if required.

This kind of skills training, integrated with local services, offers a blueprint for the future. 

Scotland has three dementia strategies which set out a series of policy commitments from diagnosis, throughout palliation and end of life; with a fourth dementia strategy in development.

Given the importance of dementia care and cost to the public and private purse, we should have a cross-party group on dementia to highlight what matters.

But we don’t – a situation that the Scottish Dementia Working Group have been seeking to address. 

The former cross-party dementia group was an important connector between politicians and people whose lives are affected with dementia.

Currently, there is a cross-party group focused on unpaid carers, but none specifically focused on the needs and requirements of older people, who represent a quarter of Scotland’s population.

Given the existence of 90 cross-party groups, what does this tell us about our social contract with older people and people with dementia?  

Any one of us might develop dementia or we might become carers.

Whatever happens in our own lives, we will need to be prepared to pay for good quality dementia care. 

Alzheimer’s Society currently estimates the total annual cost of dementia care in the UK is £34.7 billion, and the average annual cost per person is £32,250.

Unpaid family carers in the UK contribute approximately 44 per cent towards the total costs of dementia care.  

People who receive care and provide care need to feel valued. Better ways to support family caring must include new services for people with advanced dementia. 

We need to properly fund and support family carer education, integrated with the health and care systems; empowering family members as confident and valued partners in dementia care.

Most importantly, we should address inequalities within dementia care and find ways to sustain family caring. To reform and improve dementia care, we must call on those who can help make this happen to act decisively – and to act now.

Professor Debbie Tolson is Alzheimer Scotland Professor of Dementia and Director of the Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland.