Supporting people living with dementia and their families in Camden
Miles Maier is based at Camden Carers and coordinates Camden Dementia Action Alliance, a network of over 50 organisations working to make Camden a more dementia-friendly borough. Camden Dementia Action Alliance believe that with the right support people with dementia can live a good quality of life, doing what matters most to them for as long as possible. In this blog, he discusses what help and support are available in Camden for those living with dementia and their families as we emerge from lockdown.
This week (17 - 23 May 2021) marks Dementia Action Week, an annual event run by the Alzheimer’s Society to raise awareness of dementia. This year’s campaign is working to raise awareness of dementia in the health care system so that the nearly 1 million people in the UK living with dementia and their families can get the support and care that they need and deserve. Find out more about the Dementia Action Week here.
Living with dementia at any time brings challenges every day but as we begin to emerge from lockdown into a “new normal” people living with dementia and their families face a new set of challenges different to those faced pre-pandemic. The pandemic has changed us all.
As Camden’s Dementia Action Alliance coordinator, I work directly with families caring for people living with dementia at Camden Carers and talk to alliance members about the impact the pandemic has had across Camden. Collectively, we’ve seen firsthand many people living with dementia experience a deterioration in their condition due to increased social isolation, closed day centres and their inability to provide much-needed respite and a lack of social contact with family and friends. Many people living with dementia have also reported to us increased feelings of depression and anxiety caused by the disruption of their usual routines.
As a carer, I can testify that the pandemic has taken its toll on unpaid family carers struggling to balance work, life and caring for a loved one. The Alzheimer’s Society report, ‘Worst hit: dementia during Coronavirus’ exhausted’ family and friends had spent 92 million extra hours caring for loved ones from March to September last year. Of those family carers surveyed, 95% said extra caring hours had negatively impacted their physical or mental health, with 64% feeling anxious. Even after the extra hours, 45% of unpaid family carers felt the level of care their loved one with dementia needed was more than they could give.
Dementia-friendly online activities
One year on from the start of the pandemic, I’ve seen and tried a wide range of dementia-friendly online activities that can be accessed from the comfort of our own homes.
- Arts4Dementia runs a weekly group called Chatty Wednesday in which people living with dementia and their families take part in creative activities. They’ve also partnered with the Wallace Collection to offer an 8-week creative course exploring art and objects in the gallery’s collection this summer.
- I can also recommend the dementia-friendly virtual tours run by the Jewish Museum, Sir John Soane Museum and British Museum, all here in Camden.
- Elsewhere, Jewish Care and PillarCare have both put together comprehensive lists of dementia-friendly online activities that are open to all.
- Opening Doors online support groups for LGBTQ+ people living with dementia and their carers have also been a great source of help.
Evidence shows that music can help people - including those living with dementia - to feel and live better. Songhaven puts on dementia friendly concert performances online and in-person, and has made available on YouTube its back catalogue of dementia-friendly concert performances. If you haven’t already, go try out Music 4 Dementia and the BBC’s Music Memories and make playlists of music from different decades to stimulate memories.
We may not yet be able to visit London landmarks in person, but virtual guided tours and the stories behind famous buildings put on by Camden Carers own blue badge guide has been very popular with carers and loved ones.
Dementia-friendly offline activities
However, I also know from talking to families that digital can be a barrier as not everyone has access to high-speed broadband, smartphones and tablet devices or the technical skills and confidence to take part in online sessions.
For those not online or struggling with digital, I’ve seen offline dementia-friendly activities spring up across Camden over the last year. To give just a few examples, AgeUK Camden worked with the Southbank Centre on an Art by Post project, developed during lockdown to reach older adults living with dementia and other chronic health conditions - an exhibition of the project’s artwork is planned for later this year. They also joined forces with Guildhall School of Music & Drama to deliver a musical performance via a phone call to those in social isolation. My own Camden Carers and AgeUK Camden both run a number of telephone support groups, providing a lifeline to those not online. I’ve also paid a brief visit to AgeUK’s daycare facility at Henderson Court, Hampstead which undertaken a limited re-opening since March, providing socially distanced respite.
So what other help and support are available in Camden for those living with dementia and their families as we emerge from lockdown?
Firstly, we’d urge anyone worried about their own or someone else’s memory to contact their GP for an initial assessment. Getting a diagnosis gives families the best chance to prepare for the future. For those living with dementia, our colleagues at the Camden Memory Service have offered telephone support and home visits for those in most need throughout the pandemic and lockdown easing.
As we enter a new phase of lockdown easing from 17 May, many people living with dementia and their families have also reported feeling a different type of anxiety - the anxiety of leaving their homes and mixing with others. After a year of shielding, many feel out of practice at social contact or fear their dementia may have progressed and skills have been lost. In the carers groups I run, visits to outdoor spaces during quiet times have been discussed as a way of regaining confidence in leaving the house.
Making the local health and care system more dementia-friendly is also a priority and the alliance is working with the Royal Free on a new project that will see the hospital’s dementia pathway learn from the experiences of family carers through feedback and training. The Royal Free hopes to launch the project this week as part of Dementia Action Week. University College Hospital London is working on a project to make their hospital services more dementia-friendly, and during the pandemic had volunteers on the wards helping keep families in touch with loved ones.
We’re also working with the Alzheimer’s Society and Mayor of London to get a better understanding of how COVID-19 has impacted those living with dementia and their carers in London. We encourage everyone in Camden living with dementia and their families to complete the survey at: https://lse.eu.qualtrics.com/jfe/form/SV_dhcKEgyIqZoRlRA
Finally, as a dementia champion, I’m working to help organisations in Camden to be more dementia-friendly through free dementia awareness sessions. If your organisation would like to know more about what dementia is, the signs and symptoms, and the simple adjustments you can make to be a dementia-friendly organisation, ask me for a free online one-hour dementia friend’s session.
Co-ordinator Camden Dementia Action Alliance