Sharing is caring: Carers share their knowledge of a dementia diagnosis this World Alzheimer’s Day

Carers have been sharing their knowledge this World Alzheimer’s Day – to support other carers facing a new diagnosis of dementia.

Salford-based project Empowered Conversations – who work with carers and people living with dementia to improve communications – asked a group of carers what they would like to have known when their loved one was first diagnosed and what they think is important to share with other carers.

Top seven pieces of advice carers would offer to another carer.

  1. Be patient. This is easier said than done but one carer said: “I often lose my temper, though now I realise it doesn’t do either of us any good, I feel bad, and my energy is drained. I am learning to pause and take a deep breathe.”
  2. Be practical. A dementia diagnosis is a very emotional time, but it is important to get to grips with practical things as the dementia worsens like washing, dressing and travel. One carer said: “Get a wet room. I’d be lost without it.”
  3. Take one day at a time. Everyone will have their own ways to deal with a dementia diagnosis so don’t judge yourself against others and focus on the present. One carer said: “Learn to appreciate the good. Thinking about what if’s or what might happen makes things worse.”
  4. Look after yourself. When supporting a loved one with dementia, quite often carers put themselves at the bottom of the list of priorities. But self-care is important for you and will help you care better for your loved one with dementia. One carer said: “Don’t say ‘I’m fine’ when you’re not.”
  5. Find a variety of ways to communicate. Empowered Conversations offers practical support to help carers and those with dementia to maintain good relationships and this is not all about verbal communication. One carer said: “If ever in doubt – offer reassurance and a smile.”
  6. Ask for help. It is not easy supporting a loved one through their dementia diagnosis and also juggling other areas of your life like children and work. People looking from the outside in may think all is well unless you tell them the realities and give them a chance to support you. One carer said: “Caring for others is tough, try not to be alone and ask for help.” Empowered Carers provide one to one coaching and counselling support for Salford carers.
  7. Learn, learn and learn. A dementia diagnosis can be a shock and it may not be something that you know much about before it affects your own family. Empowered Conversations is a big believer in the power of knowledge. Armed with ways to deal with a diagnosis and beyond will help you cope and support relationships to stay strong. One carer said: “The Empowered Conversations course taught us how to use different strategies to manage situations which could previously have resulted in distress for us or mum, or all of us. It helped us to work on ways of improving communication, often using techniques I would never have thought of but now that make complete sense.”

Emma Smith, Project Manager for Empowered Conversations said: “We often hear from the carers ‘I wish I had known that from the start’ so we asked some of the carers that we work with to share their pearls of wisdom to help families with a new diagnosis of dementia. Power is knowledge and at Empowered Conversations we encourage carers to build a relationship with each other to share their knowledge, learn from our advice, our webinars and benefit from all the research that we have carried out.”

Empowered Conversations is part of Age UK Salford’s Dementia Support Service, which offers a one-stop-shop of support from one-to-one online person-centred counselling and coaching for carers, peer support and social groups for people affected by dementia through to a learning hub for self-development that includes training on legal and finance, carers rights, personal care and improving communications.

For more information on Empowered Conversations courses, learning resources and carers stories visit: www.empowered-conversations.co.uk

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