Jane Nickels, MacIntyre’s Learning Disabilities Admiral Nurse, shares advice for supporting a person living with a learning disability and dementia who is approaching the end of their life.
Dementia care and end of life care have long been championed within MacIntyre through our Dementia Project and currently with our Dying to Talk Project .
Supporting a person with dementia through to the end of their life is sometimes seen as challenging, but there are many things we can do to ensure that this time is the best it can be for the person and that they can experience a ‘good death’. You may want to read our Introduction to End of Life Care, an eBook that was written as part of the Dementia Project, as a starting point in understanding this topic.
Improving quality of life for a person with a learning disability and dementia
I would encourage everyone to have an end of life plan in place before it is needed. This will ensure that the person receives person centred care, and their wishes for support (for example, whether to be cared for at home or in a hospice) are followed. Our easy read ‘My plan for before I die’ will help with this.
Alongside planning, doing life story work with the person (again before palliative or end of life care is needed), will help everyone providing support to know as much as possible about the person and how best to support them. You can find out more about the benefits of life story work from our eBook, and get inspiration to begin life story work from our Good Practice Case Study. You might also find the Alzheimer’s Society ‘This is me’ leaflet useful to complete.
Consistency is key when supporting someone with dementia at the end of their life
Surrounding a person with familiar faces, objects you know are important to them, favourite smells and sounds can be of great comfort. Make sure everyone supporting the person knows what to expect and is familiar with the person’s end of life plan. This will help staff and family members feel able to support the person effectively.
The person may want increasing amounts of calm and peaceful one-to-one time with family and/or staff during waking hours. It’s important to recognise that calmness doesn’t mean just being quiet and doing nothing. Think about activities to stimulate and relax at the same time, such as a hand massage or simply brushing the person’s hair gently. Be mindful that you may need to prepare for the possibility that the person will need increased support during the night too.
Ensure the person’s health and physical needs are met in a timely manner
You will want to make sure that any necessary equipment is easy to access, so make contact with community teams (OT, SALT and your learning disability community nurse) before you might need them to find out how to access equipment etc.
Consider how you will manage the person’s pain and how they may communicate pain to you. Within MacIntyre we have a booklet on managing pain and how a person may communicate pain, but you might find using the DIS DAT Tool useful too.
Consider the feelings of those connected to the person
As the end of a person’s life approaches, peers, family, friends and support staff may feel emotional and begin grieving, even while the person is still alive. Give people time to talk, cry and reminisce about the person, and support them to explore their worries and emotions. You might find our resource on Loss, Change and Grief useful to look through.
At the end of a person’s life
It is inevitable that there will be changes in the person’s presentation as the end of their life approaches. They may experience a loss of appetite, their breathing may change (becoming shallower with longer pauses between breaths), and they may sleep more often or become more restless. The person may become incontinent, and you may see changes to their skin such as looking blotchy, reduced circulation and some people report a distinct smell (similar to nail polish).
Ultimately, the aim for everyone we support within MacIntyre is for the person to have a ‘good death’ in their preferred place, and to be comfortable and pain free.
