Supporting colleagues at UCL to navigate dementia: The Dementia Staff Network
The Dementia Staff Network provides a safe and supportive space for those who are touched by the disease.
In 2021, after tests and trips to the doctors, it was confirmed that Charles’ father, had Alzheimer’s disease. In the years that followed, he and his family navigated the complexities of the health and social care system to get the support desperately needed. It was these experiences that led Charles to set up the Dementia Staff Network at UCL in 2022.
“Navigating the health and social care system was hard. At times it was so disjointed, with no clear pathway. Knowing that there would be colleagues also facing these hurdles, and often facing them alone or with little support, encouraged me to set up the Dementia Staff Network.”
The Dementia Staff Network is now a supportive lifeline to many staff members across UCL, providing a safe space to those touched by the disease. The Network has a dedicated MS Teams site and meets once a term to share their experiences, seek advice and help one another navigate the challenges of dementia. They also have a line-up of invited speakers who share practical advice and information, as well as current research into dementia.
Talking about how the Dementia Staff Network has been a source of support, Dan, a recent member said: “The main benefit to me has been feeling part of a community of people facing similar challenges, with a channel of communication with all members for asking questions and providing mutual support. Hearing from UCL researchers about progress in understanding the various types of dementia has also been very interesting.”
Echoing the community aspect of the network, Jane said: “I have found it personally very comforting to be with a group of people that immediately ‘get it’. There is a great deal of support in knowing that you can’t say the wrong thing and you will be listened to. It was very useful to hear how others dealt with the same experience you were having.”
Aside from the community aspect, one of the main reasons that Charles initially set up the Dementia Staff Network was to create a space to allow people to share helpful information. The network welcomes all who have been touched by dementia – from those who have been carers for years to those who are at the start of their journey and something that has evolved naturally is the willingness of members to use their own experiences to help others.
We asked members of the Dementia Staff Network to share their advice and tips for those who are at the beginning of their journey supporting someone with dementia. Below is a collection of their responses, which we hope will reach those who need it:
Understand that dementia is a long-term condition with evolving challenges. Adjust your expectations about work and personal productivity accordingly.
- Emily says: My experience taught me that I should have reconciled myself to the idea that there was no solution that could solve the ongoing crisis, which was going to continue over many years, although its nature would continually change. So, the first piece of advice I would give is to give up expecting to be able to work as before, and therefore be more assertive, earlier. My experience is that the burden of caring with someone with dementia over many years is often not taken into account. People who have not experienced it simply don’t understand what it involves.
- Jane says: Be prepared and accept that it will get harder as you go along. There is no way to change that. It will be very challenging mentally and physically for the carer and the one they are caring for.
- John says: Think about where you live and whether you should move. Don't rely on the support services. Much of this is about you - the carer - as about the sufferer.
Obtaining Power of Attorney early and seeking specialist financial advice to understand care costs can be helpful.
- Dan says: In relation to financial planning, much of the information about care costs that I found on the Internet turned out to be very inaccurate, probably focusing on local authority care providers that I discovered weren't accessible to self-funders like my dad. I would advise anyone at the beginning of their dementia support journey to seek financial advice from a specialist as soon as possible.
- Mary-Jane says: Try and find out as much information as you can early on and get in place everything you can in advance of needing it, such as Power of Attorney.
- Jane says: Get a Power of Attorney for both financial and health. This can be useful if you need to talk to various suppliers (e.g. electric, gas, water) about accounts held by the person in your life living with dementia.
Learn what to expect from healthcare providers, such as GPs, regarding access to information, medication, and referrals.
- Dan says: I would advise anyone at the beginning of their dementia support journey to find out what is reasonable to expect from a GP, and not necessarily accept what a GP says if they reluctant to act or share information when needed.
- Jane: If you are able to, get a letter signed by the person in your life living with dementia giving you authority to speak to the GP about their situation and about them. Ideally, the GP would do a Social Services referral for them.
Reach out to organisations and charities for guidance, support services, and practical assistance.
- Jane says: Look for local support early on. Dementia UK and Alzheimers UK have a lot useful information on their websites. Alzheimer’s Society also has a support phone number that the carer can call. Use those services.
The Dementia Staff Network is open to all staff at UCL. For more information and to join the network, please visit their webpage.
Support for people touched by dementia
Alzheimer's Society runs the Dementia Connect support line on 0333 150 3456, which provides information and advice about dementia. Alzheimer's Society runs the Dementia Connect support line on 0333 150 3456, which provides information and advice about dementia.
Dementia UK is a national charity that aims to improve the quality of life for people with dementia. It offers advice and support to families who are living with dementia through its Admiral Nurses, who are registered nurses and dementia experts.
Alzheimer's Research UK carries out dementia research but also answers questions about dementia and dementia research, including how you and your family and friends can get involved. The charity's helpline is 0300 111 5 111 and can provide help and guidance. They also run a Dementia Support Forum. It has people with dementia sharing their information and advice, and supporting each other.
Age UK has advice on a range of topics, including advance care planning, benefits and choosing a care home, as well as information on local activities and services for those with dementia. It runs a free national helpline on 0800 055 6112.
The Carers Trust provides information and advice on its website for carers, including how to get support for yourself.
Carers UK is a national charity for carers, providing information and advice from benefits to practical support. They run online communities on the Carers UK forum.