Junior doctor Katie Smith reflects on her early experiences of caring for patients with dementia:
As a foundation doctor I cared for a number of patients with dementia during my general medical rotations.
Looking back on my portfolio, I am struck by how many of my reflective entries centred around the challenges of caring for patients with this disease, concerns about doing the right thing, and ethical questions, particularly around end-of-life care and nutrition.
I also recall vividly having a lengthy discussion with a patient about why she wanted to be discharged back to her own home, seeing that she could in that moment make a rational decision about the risks and benefits, and yet when I returned a short while later finding that she had no recollection of our conversation.
How to support people and their families appropriately, and how to judge capacity around such significant decisions, was something I found myself unprepared for as a new doctor. I really valued the help and guidance of my seniors, and the wider team of health and social care staff, and learnt a lot through our multidisciplinary approach.
Although it can often be complex, dementia is also common. Across the UK, 850,000 people live with dementia, and in the next year, a further 225,000 people will develop the condition. That equates to over 600 new diagnoses in the last 24 hours alone. For each of those individuals and their families, that diagnosis can be emotional, shocking, devastating, and for some having their difficulties formally recognised can also represent a relief. It also begins a whole range of practical, legal, and financial considerations, many of which do not have simple answers.
When we add to this that up to a quarter of patients in acute hospital beds have dementia, and an estimated 670,000 people in the UK are unpaid primary carers for someone with dementia, it’s clear that most doctors will have individuals in their patient population who are in some way affected by this condition.
As such, doctors need to be competent and confident in managing the condition and caring for patients, their families and carers. This requires awareness of the complexities involved and having the resources available to manage these challenges compassionately.
There are many simple things that can be done to provide support and care for patients with dementia and which can make a real difference to those involved:
- The common approaches to communication with patients remain relevant: smiling, eye contact, open body language and positioning yourself at the same level as the person you are talking to are all simple ways to help reassure someone with dementia when you are interacting with them.
- Particularly in a hospital environment, being aware of how elements such as background noise and poor lighting can affect individuals with dementia can help you make small changes that might improve communication.
- Involving carers fully is particularly important, particularly as they are often very well-informed about the patient and also because it is crucial to ascertain how they are coping, and feeling, alongside the person with dementia.
- It can feel more straightforward to direct discussions towards carers and relatives, particularly if the person with dementia is having difficulty answering questions, or is in the advanced stages of the disease; try to get the balance right so that you include the carer but don’t exclude the patient.
Assessing capacity and maintaining appropriate confidentiality is a key part of dementia care. For patients and carers, conversations about issues such as power of attorney, advanced decision making and paying for care can be difficult, upsetting and complicated.
For health professionals it is important to have an understanding of these matters, so you can support patients and their families, and are aware of your legal and ethical responsibilities in this area. For doctors, as I frequently found, these aspects of care can often seem quite daunting and complicated; it can be difficult to know what the right approach to take is, or what to say to patients and carers seeking advice.
However, there are existing resources that can be helpful for health professionals and their patients, when trying to make such decisions, and understand these subjects. The General Medical Council has some practical tools, such as the capacity flowchart, which puts the guidance into practice to help you assess a patient’s capacity in end-of-life care situations.
More broadly their Better Care for Older People pages include pages on mental health and dementia, safeguarding vulnerable adults and end-of-life care, as well as a range of other topics and resources aimed at doctors, patients and carers.
Organisations such as the Alzheimer’s Society, Alzheimer’s Scotland and Age UK have lots of guidance available which help to clearly explain about the legal and financial aspects that people often find challenging. Many organisations also offer staff education resources and the BMJ Learning site offers online modules on a range of aspects of dementia care.
In the context of a busy day, with concerns about confidentiality and capacity, it can be easy to feel that the situation is too complex and that the bigger picture is beyond your scope. In reality most people with dementia and their carers are not expecting you to solve all their problems, but everyone in the consultation does need your attention, your respect and your time.