World Alzheimer’s Day 2020

On World Alzheimer's Day 2020, ALLIANCE member Alzheimer Scotland's Chief Executive shares their recent work.

As Chief Executive of Scotland’s leading dementia charity, I’m often asked to lend my voice to current affairs. Keeping up with, and contributing to, national conversation plays a central role for any leader. This involves a level of important investment, balanced with the task in hand – making sure nobody faces dementia alone.

Scottish Government updates and parliamentary debates, breaking news and political views. It’s essential we all listen and understand where we are with this dangerous virus and the measures put in place to contain it. It’s essential – critical – to both listen to and understand how this global pandemic is affecting the people we are here to support, and to be a conduit for change.

Like many organisations, we have reimagined and recalibrated our services, accelerating our digital innovations to give people as much stability and consistency as our bricks and mortar support. In the 6 months since national lockdown, Alzheimer Scotland has supported thousands of people with dementia, their carers and families. The angst people are enduring is palpable.  The impact on our dementia community is devastating. Through our localities and dementia helpline staff & volunteers, we are hearing evidence of:

• A substantial decline in the physical and mental health of people with dementia, increased levels of stress and distress and significant cognitive decline and acceleration of the progression of the dementia.

• Increased levels of carer stress, with many carers reporting that they are reaching the point where they are no longer able to cope.

• An apparent increase in people with dementia moving to care homes earlier than otherwise would have been necessary in the face of overstretched social care.

• The distress caused by the restrictions in care home visits and the tragedy of those who have lost precious time with the people they love.

These are just some of the issues that people with dementia and carers are experiencing. I could go on. We are heading into the winter months and a potential second spike in the spread of the virus. We need to protect people, but we also need to balance that with the increasing evidence of the unintended harm that we have seen over the past 6 months. We simply cannot go into the next few months without learning from what we now know. Alzheimer Scotland have raised these issues with Scottish Government ministers and have called for action to be taken now.

• We have asked for a dedicated post diagnostic support fund to double the capacity to deliver high-quality person-centred support after a diagnosis, so that everyone who needs it – including those who have missed out as a result of the pandemic – can be supported after they have been diagnosed.

• To deliver Fair Dementia Care in Scotland, we have asked for an increase in the nursing care element of free personal and nursing care payments to end the inequity of people with advanced dementia paying for care, when their needs are clearly health care needs.

• We now ask that a named identified health worker is assigned to every family with a loved one in a care home to work with the family and the care home to deliver tailored visiting plans. This is required urgently to overcome the current blockages to reintroducing care home visits, which are preventing families from being recognised as equal partners in care.

Scotland is widely recognised as having some of the most progressive dementia policies anywhere in the world, and there can be no doubt that substantial progress has been made, particularly in the last decade. But there are still gaps which create substantial inequalities for people living with dementia and their families and carers. This was the case in a pre covid world, but the pandemic has exposed these inequalities in the cruellest of ways.

As the country looks towards renewal and recovery, I read with clear interest the Scottish Governments programme set out in “Protecting Scotland, Renewing Scotland”. While I welcome the announcement of a much needed review of adult social care and the establishment of Brain Heath Scotland, I must ask why, when the impact of this crisis on people with dementia and those who care for them is so severe in both nature and scale, has dementia not being given a greater priority? What more needs to happen? Today is World Alzheimer’s Day. People with dementia and those who care for them are not statistics. They are human beings, and they deserve better. They deserve more action.

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