Imagine if no one properly answered your questions. Picture not having your opinions fully taken onboard. Visualise no one acknowledging your comments, laughing at your jokes, or listening to you. Consider being rarely understood. Sounds lonely and frustrating?

This is what the situation can be like for those living with dementia, or what it feels like for anyone who struggles to be heard. Yet, it’s only when we take the time to really understand a person’s wishes, fears and concerns, when we support those who often go unheard, can we truly honour the Mental Capacity Act. The Act protects people’s rights to make their own decisions about their life, including the care and support they receive and how they receive it. It’s important we have meaningful conversations with people living with dementia or anyone we support, so we know what their wishes would be, should a situation arise where they are deemed to lack capacity, that is, be unable to make decisions about things like the care and support they receive. 

Below are ways to ensure marginalised people’s voices are heard, which can be applied in many different situations.

Here are five ways to increase the chances of someone’s voice being heard

1. Remove unwelcomed distractions.

Sometimes several stimuli can be competing for the attention of the person you’re trying to establish the opinion or wishes of.

For instance, Mr Dixon, who lives with dementia, wasn’t engaged in a conversation about his care because the sight of his daughter gardening through the patio doors was distracting him. However, his wife and the Community Mental Health Nurse knew it was important to hear what he had to say. The nurse suggested switching position with Mr Dixon’s wife and so that he wasn’t distracted, and he agreed. From then on, Mr Dixon became more actively involved in the conversation. 

2. Aid communication. 

If there’s something that encourages the person you support to communicate, try to make sure this is readily available.

For example, Mr Crossley led a fun-filled and lively lifestyle; he loved spending time with his children and was always singing, dancing, and going to see shows. His daughter remembers how he used to dance and sing as they walked along the street together. These days, Mr Crossley is often lost in his ‘own world’ and doesn’t recognise his daughter. The nurse in the home where he lives helped organise some music on an MP3 player with some headphones for Mr Crossley to listen to the music that he enjoys. When he listens to this music, his posture changes, he recognises people and engages fluently in discussions, expressing himself and his emotions. 

3. Place yourself in a strategic position.

The position in which you place yourself affects the ability of a person living with dementia (and potentially others who struggle to express themselves) to communicate. It’s important to be aware of what positioning will support communication and to organise the space to enable this to happen. 

This was the case for Mrs Merry, who lived with dementia. Her husband had invited the nurse to sit next to Mrs Merry. However, Mr Merry took his seat on the opposite side of the room from them and sat at a distance. Throughout the conversation, Mrs Merry constantly looked to Mr Merry for support before responding to the discussion or questions. The nurse spotted this and realised that Mrs Merry wasn’t feeling comfortable and suggested a change in seating arrangement. The nurse swapped seats with Mr Merry and moved a chair closer, so that the three of them sat an equal distance from each other. Mrs Merry appeared more relaxed with this and contributed more fluently to the conversation. She could hear clearly what was being said and therefore was more involved. 

4. Allow communication the time it needs.
   
   When a person is finding it challenging to communicate, it’s crucial not to rush them. Granting people the time to express themselves is important in making sure that they’re fully understood.
   
   The situation with Mrs Walker illustrated this. She could take a long time to think about what she wanted to say and find the right words when she was replying to people. Her support worker had noticed that people in her life were answering questions on her behalf when there were long gaps between a question being asked of her and her response. The support worker felt that people were answering for Mrs Walker with the best intentions, to help her, and believed that some people felt uncomfortable with the length of silence. She also thought that other people answered for Mrs Walker because they had concluded that she was unable to answer the questions. Concerned that Mrs Walker was losing her opportunity to express herself and that the other people in her life were losing their chance to fully understand her and what she wanted, the support worker talked to the group about this and encouraged everyone to allow Mrs Walker time to answer. By doing this, the group began to appreciate that some of the answers that had been given on Mrs Walker’s behalf by others weren’t quite what she wanted.
   
5. Create opportunities to talk.
   
   Appointments, household tasks and family commitments, you name it, life can get incredibly busy. People living in a service setting, for example, in a supported living scheme or a care home, can find themselves in an environment with other people and staff members focused on their daily routines and tasks. In whichever setting a person living with dementia finds themselves, making the time to talk is vital, whether the conversation happens by having a chat over a cup of tea or through spending time with the person doing one of their favourite activities.
   
   Structured or timetabled time for conversations, such as review meetings, shouldn’t become the only times for meaningful conversations. Rather, opportunities for conversation should be grasped as they occur.
   
   Take Mrs Howitt for example. She lives in a care home with 39 other residents and, to manage everything that needs to be done within the home, everyone living there must follow set routines. Everyone gets up at a set time, has breakfast at the same time and continues to follow the routines applied in the care home setting until people go to bed in the evening.
   
   There are eight care assistants / nurses on duty at any one time and they’re often busy providing personal care to people, record keeping, tidying, and making appointments for residents. There’s very little chance to sit and have a chat. Mrs Howitt is often watching TV and gets very little opportunity to do anything else.
   
   Apart from knowing that Mrs Howitt has a favourite set of nightwear, what she likes to eat and her favourite flower, people working at the care home know very little else about her. They’re especially unaware about how she’s feeling each day. This is naturally a very lonely existence for Mrs Howitt even though she’s surrounded by so many people. 

The care home where Mrs Howitt lives recognised that they needed to know more about the people they supported and cared for to be able to offer an increased quality of life for their residents. Time was made to get to know the residents and listen to what mattered to them, their stories, and everyday preferences. The family and friends of the residents were also invited into these conversations based on whom each individual resident wished to invite.

Underpinned by what was learnt through these conversations, the routines in the care home were transformed to be able to meet each person’s preferences, the options for food and mealtimes became more flexible, as well as opportunities to get involved in activities inside and outside the home that were arranged based on residents’ skills, interests, and hobbies.

These communication tips are transferable to many different circumstances. ‘A Family Guide to Living Well with Dementia’, by Liz Leach Murphy and Jayna Patel explores more communication tools when supporting and caring for someone, living with dementia or otherwise, and practical planning tools to record meaningful conversations.