Caring for a loved one with dementia

Beth Britton looks at the challenges posed by stigma and shares communication tips to help families supporting a loved one with dementia.

Dementia awareness has come a long way since the days when dementia was associated with asylums and a view that a person was ‘mad’. Stigma has also diminished but sadly not been eradicated, meaning that campaigns like Dementia Action Week are still very much needed to keep dementia in the public consciousness.

I still cringe recalling professionals caring for my dad who referred to ‘changing his nappy’ and ‘feeding’ him. In my work I’m a huge advocate of understanding and adhering to dementia language guidelines, which were created by people living with dementia to educate us all on the words that make them cringe.

These examples are just two of many that prove how vital communication is in all aspects of dementia care and support for both defeating stigma and supporting a person to live as well as possible. But what does that look like if, right now, you are a family member with a loved one who has diagnosed or suspected dementia?

Communication – The key to good dementia care

Whilst professional support staff like Bellevie’s Wellbeing Support Workers receive training to understand the best ways to communicate with a person who has dementia, most families never have any formal training to guide them. It’s perhaps no surprise then that many family members struggle with this aspect of supporting their loved one the most – often from before the person is diagnosed – and these difficulties frequently intensify as the person’s dementia progresses.

From my personal and professional experiences, I would recommend the following to enhance communication with a person who has dementia:

• Remain calm if your loved one is repeating themselves (which is often easier said than done), answer like it’s the first time they’ve asked the question, and consider providing environmental prompts like a dementia clock to help your relative to orientate themselves if they are constantly asking questions like ‘What is the time?’ You can learn more about environmental modifications from the Alzheimer’s Society.

• Keep your questions and sentences short and simple, asking one thing at a time.

• Speak clearly, at the volume and pace your relative needs to hear you, and use communication aids like picture cards or physical objects if they are finding it difficult to understand the meaning of words alone.

• Prompt your loved one if they appear to be struggling, but don’t seek to step in and put words in their mouth.

• Watch your relative’s body language carefully – what is it telling you about what they are thinking and feeling?

• Give your loved one time and be patient. This isn’t always easy and you will need to be patient with yourself.

• Don’t try to correct your relative – think about what they are trying to tell you, rather than the accuracy in the actual words they are using.

• Listen carefully, being aware if you’re getting distracted or your mind is trying to skip ahead.

Avoiding communication pitfalls

It’s often hard in a busy day supporting a family member to always be aware of our own behaviour or attitudes. Most family carers end up feeling snappy, not doing or saying what they otherwise might if they felt less stressed or tired. After all, we are human beings, not robots.

When reflecting on your communication, try to think about what is going to help your loved one to feel valued, autonomous and uphold their status in your family. Being aware of stigmatising language, like that documented in the language guidelines linked above, will help you to avoid it and replace it with more empowering language. Ultimately, promoting communication that enables your relative to have choice and control and remain as independent as possible will enable them to live their best life, which is a positive outcome for both of you.

Accessing additional support

It’s important to remember that for many family members the skills I’ve described above will need to be learnt, they won’t just come naturally. For this reason, I would recommend accessing the training and resources offered by Dementia Carers Count. They provide courses and advice that helps family carers to communicate positively, as well as education on many other aspects of supporting a person with dementia which will enable you to care effectively for longer.

I would also recommend the Admiral Nurse Dementia Helpline. This is staffed by specialist dementia nurses who can provide support on a wide variety of issues and challenges.

These are services I never had access to when my dad was alive, but I very much wish I had, and I would urge all family members to seek out and access the support that’s available.