In the field of learning disabilities, a lot of people frequently get spoken for, leaving room for lots of assumptions to be made. When you add a diagnosis of dementia into the mix, the person is sometimes left out of decisions entirely.
People with learning disabilities are living longer, which has led to more people being at risk of being diagnosed with dementia. However, gaining a diagnosis is not the only issue for a person with a learning disability – if, in fact, the person wishes to be given a diagnosis – but there is also the need to support the person to make the necessary decisions and help them understand how it will impact their lifestyle, relationships and future plans. It’s not a case of providing a diagnosis and leaving it at that. Ongoing post-diagnostic care in the form of medication, social and emotional support and even environmental changes can make a big difference to someone with a diagnosis and can ensure they are able to live well with dementia.
The objective of person-centred care is for everyone to live a life that makes sense to them, with outcomes decided by them.
This approach must be extended to people on the dementia pathway. Changed behaviour can often lead to assumptions being made and documentation being created and maintained without the person’s input. Support must be provided for decisions about medication, equipment and other health needs to be made by taking into consideration the person’s true wishes or wants. Shared living environments must also be considered; involving other people such as family, friends and partners in the decisions that need to be made is essential.
It is only by finding ways to really engage with each individual, understanding their needs and wants, network of relationships, talents, assets, hobbies and interests, and what is important to them, that genuine person-centred care can be given. Keep the person and the people closest to them involved every step of the way, from early doctor appointments, health recording, diagnosis and plans for end of life care. There is a need to be creative in the learning disability field; allow the person to be involved in the creation of life story work, and present them with options when adjustments need to be made to the home environment or living situation.
Person-centred care shouldn’t be an add-on or an afterthought; it should be embedded in the way that ongoing care and support is delivered. For people with a learning disability and dementia this is no exception, as by really understanding what is important to them, they can be best supported to live well with dementia.