As we reach the end of this year’s Dementia Awareness Week, we want to thank everyone who has made a contribution and by doing so, has highlighted and raised the collective voice of the dementia community throughout Scotland.

Scotland has come a long way in recent decades to remove the cloak of discrimination and stigma around dementia and to take the cause out of the shadows and into the mainstream of public policy focus and attention. However, many hidden injustices, inequalities and pressures on people living with dementia and their families not only remain but must also be highlighted and crucially, acted upon. Families and carers of people with dementia have carried the main burden of the pressures during the pandemic - and still are. Add to this the cost of living increase and ongoing recovery pressures on the NHS and the social care crisis we find ourselves in and it is safe to say the families of people living with dementia are at breaking point. Every week, they tell our Helpline team and frontline staff how they are unable to cope, feel at the end of their tether and are struggling to see a way through these circumstances. We must listen, and we must take action. Our belief that you can live well with dementia is predicated on there being the right level of social, health and community care supports in place. In the current climate, living well risks being an aspiration rather than a reality for the many.

So, what can be done? We could bring an end to the unfair and unequal charges that are being placed on people with advanced dementia living in our care homes. There is no question that for many of these individuals, their needs are unequivocally health care needs and they should not be paying for this care. At the very least there should be some ability for individuals to have these healthcare needs assessed, but the process for this was removed in 2015, a point that we raised with Scottish Government officials as part of our Fair Dementia Care campaign. Not only are these costs unfair, they can be excessive and we know many people have had considerable increases in their fees, above current rates of inflation. This looks set to continue as the providers seek to balance the costs of the pandemic and cost of living increases. These are real costs - but it should not be for people with advanced dementia to meet the health care component of these. It is time to bring this inequality to an end.

We could also do much more to support people with dementia and their families living at home. We know from our Hidden Impact report how many people’s needs substantially increased during the pandemic as we removed the very fabric of the support systems which helped people live well. As we gradually rebuild this infrastructure, the message we hear is that this increased level of need is outstripping what is available and many people are waiting for assessments, reassessments, care packages or indeed care staff to be allocated.

So, what can be done? In the absence of having direct social care staff and services we could allay the pressures on families in many other ways. For example, we know a small grant with creative options can make an enormous difference to people through the success of our recent Scottish Government funded Time for You fund. Our experience so far certainly suggests it is working. When caring is your preoccupation, tasks such as cleaning, shopping and maintaining a home all mount up; finding the time to breathe becomes an elusive art. Time for You is enabling people to recalibrate their lives. Modest outlays are making a world of difference. One carer, overburdened by the continual hanging out of laundry, has been liberated with the purchase of a tumble dryer; another, able to buy a fishing permit, has rediscovered precious time and space to recharge his batteries.

There is no reason why this could not be expanded as a measure to tackle the crisis and that any person who is waiting for care services, supports or assessments as a result of a lack of staff or care services be offered a direct payment which will enable them to offset the additional pressures of caring by being able to flexibly use this money in other areas of their life such as with shopping, cleaning, respite and short breaks.

We need to appreciate and trust the potential creativity and ability of individuals and families to use public money well. Our experience through this fund is that they can. We believe that this form of self-directed support could and should be used in response to this crisis and scaled up to empower families to do the things that make the biggest difference to them. They might do it in a way that is very different from what the state can provide in terms of formal care services - but that is perhaps what we need at this point in time. Giving people a voice can be a key part of the recovery process. If we trust people to make decisions that will improve their circumstances, then they will make good choices. We need to ease the legal constraints that prevent this from happening.

So, as well as calling for Fair Dementia Care, we are also asking that all policy makers, politicians, local and national government get behind this idea of providing immediate direct payments and grants to people living with dementia and their families waiting for care. It may not be a perfect solution, but it could provide vital support to those who need it most in these uncertain and difficult times.