2. Understanding the person with dementia

People with dementia are more than their diagnosis.

Lots of things contribute to who they are and how they feel, which may affect how you find out what matters to them.

Dementia includes many progressive neurological conditions. It’s important to understand the type of dementia the person has, and how it’s likely to affect them.

You can find out more about types of dementia on the Alzheimer’s Society website.

It’s also important to understand how the person and their family feel about the diagnosis. It can affect how open they feel to having a conversation.

Knowing whether the person understands their diagnosis, their resistance to it, and how they feel about having an assessment will help you plan the conversation.

Person-centred care is a type of dementia care that focuses on the person rather than the disease.

Thomas Kitwood developed this concept in the 1980s. It explains how important it is that we see the person with dementia as a unique individual with their own experiences, preferences, and needs.

Person-centred care aims to understand and respond to the person’s emotional and psychological needs.

The behaviours we often see in dementia, such as agitation or withdrawal, can be a way for us to tell that the person’s needs haven’t been met.

A key principle of person-centred care is the idea that "if you've met one person with dementia, you've met one person with dementia."

This means that we should tailor care and support to the specific person rather than using a one-size-fits-all approach.

The main elements of person-centred care are:

• comfort: making sure the person feels safe and free from pain
• attachment: keeping up relationships and connections with other people
• inclusion: involving the person in social activities and decision-making
• occupation: making sure that the person is doing meaningful activities that give a sense of purpose
• identity: recognising and respecting the person’s history, personality, and preferences.

These help us to create a supportive environment that enhances the quality of life for people with dementia.

This way of working also gives us a deeper understanding and connection with the people we care for.

It's impossible for us to fully understand someone from just one conversation.

But here are some questions to help you get a sense of the person's strengths and background before your conversation:

• religious or spiritual beliefs
  • Are they religious or spiritual?
• life experiences
  • What are their significant life experiences?
• relationships
  • What are their key relationships?
• work history
  • Have they worked, and what was their job?
  • Is this an important part of their identity?
• family role
  • Are they a parent or homemaker?
  • How connected are they to their children and families?
• independence
  • What level of independence do they have, and how important is it to them to still have this?
  • What are their worries?
• activity level
  • How active are they?
  • How important is this to them?
  • What support do they need to keep doing this?
• hobbies and interests
  • What are their hobbies and interests?
  • Will they need help to keep doing these?
  • Who can help them?
  • How do they feel about depending on someone else for this?
  • What are the risks and how can we reduce these?
• social and community activities
  • Which social and community activities are important to this person?
• challenges and inequities
  • What challenges and inequities does this person face?
• long-term wishes
  • What are this person’s longer-term wishes?
  • And how capable is their support network in facilitating these?
• legal considerations
  • What do you need to consider in terms of capacity, power of attorney, and long-term living situations?
• life story
  • What can you learn about this person’s life story?
  • Who can you learn it from?
  • How can this inform the care and support that you arrange for this person?

Asking these questions can help us to get a deeper understanding of the person with dementia. This is essential for providing person-centred and trauma-informed care.