2020 - Challenges, tough decisions, and our path forward to help people affected by dementia

Our CEO Kate Lee shares what has been happening at Alzheimer’s Society over recent months, and her thoughts about what is coming next. This news post was updated on 14 August 2020 to reflect changes to our Side by Side service.

Since lockdown started we have had some tremendous highs and crushing lows, both inside the organisation but also within the wider dementia community.

People living with dementia across the UK have been hardest hit by coronavirus, with over 1 in 4 deaths those of people with a dementia diagnosis.

We know that despite the incredible efforts of care home staff, the sector was largely ignored by Government during the first part of the crisis with devastating consequences.

Families have been separated from loved ones for months and there is evidence that those with dementia, living in both residential care and at home, have declined significantly faster than expected, with social isolation a major factor in many carers and people living with dementia’s lives.

I have been incredibly proud of how the organisation has responded.

Our response to the pandemic

  • Since 23 March we have taken over 15,000 calls to our Dementia Connect support line, and we made over 100,000 specialist support calls to families we work with regularly.
  • We've launched a new service, Companion Calls, delivered by an army of amazing volunteers who just love a good witter!
  • Our famous Singing for the Brain service has gone online, and we have delivered hundreds of regular sessions across the UK, often with a new global audience tuning in! We will be shortly launching sessions in other community languages with music and reminiscence activities from different cultures.
  • Our Talking Point Peer Support Group has grown by 176%. So far our support services have been used over 650,000 times.
  • Our researchers have pivoted into looking at new methods of support during coronavirus, while our Policy and Campaigning teams have successfully lobbied for change in support to care homes and improved family visiting.
  • Our Dementia Friends programme has seen an uplift in take-up online, with feedback on how valuable it has been to know more about dementia as people offer new support to elderly people in their neighbourhood.
  • Our Emergency Appeal has been incredible so far, thanks to our amazing friends and supporters. The money being raised is an absolute lifeline for us, along with the £1m we received from Government to fund an extension to our support line and other services.

Sadly, however, much of our income, particularly that generated through events like our Memory Walks, marathons and cycling events, has disappeared, along with income that many of the employees of our brilliant corporate supporters generate through fundraisers in their workplaces.

Our community income has been hit, as so many of our brilliant local volunteers haven’t been able to get out with their tins, talks or tambourines!

The result of this has been that this year we expect to lose up to half our income, and sadly, we think with the challenges of social distancing some of this might continue into next year too.

Our immediate priorities

As a result, we, like so many other charities are having to think long and hard about how we now spend significantly less money but still deliver as much impact as possible.

We have not held significant ‘reserves’ or savings for a rainy day in the past. Although we have always remained around the level recommended by the Charity Commission, we have felt that people don’t donate to have money sat in the bank, and have put our funds to work straight away.

This does mean now, however, that for the organisation to survive and thrive for future generations of people who will be diagnosed with dementia, we need to make some tough decisions. We know that is unsettling for those that rely heavily on support from us, and we have consulted with people affected by dementia about the decisions we are making.

As a result of those conversations we are making sure that for the next two years we prioritise two key aspects of our work.

Our Dementia Connect Service, the way we can support thousands of people, including in crisis, with face-to-face, telephone, online and practical help and emotional support, is absolutely vital. We have over 650 trained face-to-face staff working across Wales, Northern Ireland and England, supported by a team of experts on the phone and online. Not only do we get help to those that call us but also reach out to people we know might be struggling, checking in regularly.

Our lobbying and campaigning work is also crucial. We know that the failing in social care over the last five months have demonstrated just how broken the social care system is and we must keep up the pressure now for proper reform of the social care system, not just residential care but also homebased care and respite support which are vital in some form to over 90% of people living with dementia. This work MUST be underpinned by the views and opinions of the experts, those affected by dementia – therefore the services we run such as Dementia Voice and Talking Point will remain a significant part of our work.

Other areas we will need to scale back on for now, and sadly some of our work may need to stop.

Making difficult changes and finding new ways of working

We also want to do things differently to try and reduce our costs but still deliver a service and reach our goals. It would be strange if we weren’t - we cannot lose millions of pounds of income and nor have to cut our cloth accordingly.

We have learnt a huge amount recently about the power of online services, and we want to capitalise on this. If we cannot afford to go back to some of our group activities in the same way, we want to look how we might be able to use online capabilities better. There is much to explore here, not least the needs of people who aren’t able to use online support - however, we want to reassure our service users that face-to-face support will continue to be at the heart of our work.

We have decided to merge the great work we do around creating Dementia Friendly Communities with our Community Fundraising Teams. This isn’t to make Dementia Friends or our Dementia Friendly Communities work a fundraising activity, but it is to make the most of all our community-based staff and volunteers in delivering our vital messages about dementia awareness. We estimate that by making this change, we can continue with our ambitious targets around developing more communities and friends at a lower cost.

There will be further changes to come, some of which may affect our service delivery. We promise to keep you updated on these as soon as we possibly can after volunteers, staff and service users have been consulted on the implications for them. In order to survive this period, but still be in healthy shape for the future, we are sadly reducing our staff down by 20%. In line with the priorities outlined above we will protect our face-to-face Dementia Advisers.

We are reducing as many of our ‘backroom’ functions as we safely can and we will postpone some of our future research commitments. We have used the Government furlough scheme wisely to help with our finances, we will be reviewing our property portfolio to see if we can manage with less office accommodation, and we have spoken to many of our suppliers, who have generously reduced their bills to us by over £1m.

Our changes to Side by Side

Sadly, we are closing our volunteer-delivered Side by Side service to new applicants, where we have used voluntary income to fund it. The service has had mixed success across the UK.  While some families have benefited immensely, our original plan that each volunteer would only work for a short period with a family to help them get back into a loved sport or hobby has not played out as we hoped. We have therefore struggled to offer the service as widely across the UK as we had hoped for the amount we have had to spend on it. This has been an incredibly tough decision; we know many people have loved it but we have also struggled to attract volunteers who were comfortable to undertake the significant training required to deliver the service safely.

We will continue to support all existing Side by Side pairings to continue to a natural end, while contracted Side by Side services will continue until the end of the contract, at which point they will be reviewed as per normal practice.

Our ongoing commitment to people affected by dementia

The key for us now is that the needs of those with dementia have never been higher and every pound is vital – we need the support of our amazing donors more than ever and their confidence in us continuing to deliver an outstanding, cost-effective service to thousands of people that need us, every single day.

As painful as our current decision-making is, I am excited about our future. We have learnt so much over the last few months about how we can reach even more people and about what really matters to them. We have built new partnerships and collaborations such as the new #OneDementiaVoice collaboration of seven leading dementia charities which will create permanent, long-term impact. We have shown how agile we can be, how united we are, how resilient and creative, and how we are able to make tough decisions with and for, and always in the best interests of, those affected by dementia.

We will emerge from this time stronger, leaner and if not bigger – certainly better.


Kate Lee, CEO