The 21 September 2021 marks World Alzheimer’s Day. This is an international campaign to raise awareness and highlight issues faced by people affected by dementia (dementia is an umbrella term for a number of diseases that affect the brain, with Alzheimer’s disease its most common cause).
In this interview, Patient Safety Learning speaks to Alison Keizer, a Mental Health Nurse and trust-wide Dementia Lead, and Fran Hamilton, Occupational Therapist and Deputy Dementia Lead, at Sussex Community NHS Foundation Trust, about the patient safety issues affecting patients with dementia and how they can be supported to reduce risk.
Questions & Answers
Hi Alison and Fran, can you tell us a bit about your roles?
We both work at the Sussex Community NHS Foundation Trust where we work with people throughout their dementia journey from pre-diagnosis to end of life, within acute, community and care home settings. Between us we have over 30 years’ experience working with people living with dementia and their loved ones.
Our team’s role within the Trust is to provide consultancy and direction to enhance and develop the quality of care given to patients with dementia or delirium. We are here to support our teams to have the knowledge, skills, understanding and empathy to be able to support everyone with dementia and delirium using the Trust’s services.
Can you tell us more about dementia?
There are currently estimated to be around 850,000 people living with dementia in the UK. Dementia is an umbrella term for a number of diseases that affect the brain. These include Alzheimer’s Disease, Vascular Dementia and Lewy Body Dementia. People living with dementia may experience memory changes, difficulty with communication, sensory changes and difficulties with problem solving. This can all lead to an increase in stress, which as we all know makes life that much more difficult. People can and do live well with the condition and it is vital that we support them to do so when they use our services.
What are the safety risks and concerns for patients with dementia when they access healthcare?
People living with dementia will have strategies to manage well, day to day, in their home setting. When they come into a new setting, either as an inpatient in one of our intermediate care units or as an outpatient, these strategies may be more difficult to use. The environment may be confusing and difficult to navigate.
A patient in distress at being in an unfamiliar setting, surrounded by people they do not know, may easily be labelled as aggressive and staff may respond as such. It is vitally important that any such distress is seen as an attempt to communicate an unmet need and for staff to look for ways to meet that need.
People living with the later stages of dementia may have significant communication difficulties. They may be in pain but unable to tell us. It also may mean that without support they may be at significant risk of not eating or drinking enough.
Another potential risk is that people living with dementia may not be given the same access to rehabilitation opportunities. Everyone has the right to rehabilitation and we are happy to support teams to overcome any barriers.
Undetected delirium, which can be mistaken for dementia, can be life threatening. If we see a sudden change we must think delirium. We are supporting staff to prevent, detect and treat delirium.
How can these risks be reduced?
There are plenty of ways that we can reduce these risks. Any changes made that benefit people living with dementia, benefit everyone using our services.
- Make people feel welcome, safe, comfortable and involved.
- Ask what matters to you and use this as the basis for all care plans and goal setting.
- A few communication tips include: slowing down, ensuring you are at the same level (rather than standing over someone), look unhurried, use eye contact and SMILE.
- Avoiding any moves, especially at night.
- Family can often feel at a loss when their loved one is unwell. By involving family and friends and welcoming their input, we have better outcomes for the person, the relative and the team. Ask them to complete the 'This Is Me' document from the Alzheimer’s Society (or an equivalent) and have this in a prominent position for all staff to read it.
- Ensuring that people have their glasses, hearing aids, mobility aids, or anything else that makes life easier at home, with them - this includes any comfort items.
- Replicating as much as possible the home routine for the person whilst in ICU will ensure that they are not unduly impacted by the stay, and that these skills will be retained on their return home.
- At the later stages, communication may be impacted significantly. This can mean that someone may be in pain but is unable to tell us. We are all able to see if another person is in pain and we must look out for the signs.
- Encouraging people to be up and dressed and moving around, engaged with meaningful activities and doing as much for themselves as they can will ensure that skills are not lost on their return home.
- Dementia inclusive environments make moving around easier. Having clear signs with words and pictures will remove some of the stress. Ask yourself "are our services easy to navigate?"
Do you have examples of projects or initiatives you've put in place locally to improve safety and care for people with dementia?
Name badges with black writing on a yellow background have made a real difference. These overcome many of the vision problems that many older people deal with, along with the visual perceptual changes which often accompany dementia.
Several of our Intermediate Care Units have blue water cups and blue water jugs. These are more visible. When placed within people’s eye line and within reach, people are drinking more as this acts as a visual prompt.
What support do staff need to be able to keep patients with dementia safe? What do you do locally to support staff?
We offer training both in person and e-learning for all staff to support them to gain the knowledge, skills and empathy to support the best outcomes for patients living with dementia. Staff can also refer to us for support with problem solving via the dementia page on the intranet. As part of the Trust Frailty Week we did some bite-sized training on both dementia and delirium. We use the 'This Is Me'.
Does your role/team exist in all Trusts? If not, what are the risks associated with not having that specialised team in place?
We are pleased to say that most Trusts now have dementia teams (usually very small!). We regularly work in partnership with our colleagues in local trusts and share resources with others around the country.
Are there wider system changes that need to happen to help improve the way patients with dementia are cared for?
Society has come a long way in its view of people living with dementia but we need to keep up the good work. We must offer hope and ensure that people have the tools and support to manage well to continue to live the life they want to after a diagnosis of dementia. Making space for people to have their voices heard will help us improve services for everyone.
- NHS England and NHS Improvement, About Dementia, Last Accessed 16 September 2021. https://www.nhs.uk/conditions/dementia/about/
- Alzheimer’s Society, This is me, Last Accessed 16 September 2021. https://www.alzheimers.org.uk/get-support/publications-factsheets/this-is-me
Other dementia resources on the hub you may be interested in:
- Healthcare Improvement Scotland: Dementia in Hospitals Improvement Toolkit
- Dementia UK: Making the home safe and comfortable for a person with dementia
- ‘Mum had dementia and received fantastic care. Why isn't it the same for everyone?’ - Julia's story
- Dementia Safety Guidelines - Care Giver Homes
- Barbara, the whole story - a series of videos