According to the Alzheimer’s Society, about two thirds of people living with dementia in the UK are living at home – usually with the support of a relative or friend who is their carer.
Looking after someone with dementia – the umbrella term for degenerative brain disorders, such as Alzheimer’s – can be incredibly upsetting, isolating and painful. But there is help, support and understanding available that can make things a little easier to cope with.
Founder of Singing for the Brain, Chreanne Montgomery-Smith, said “people hear and read so much about dementia in terms of a decline and the progression of symptoms – that is by far the overwhelming narrative – but people with dementia show us every day that it is possible to live well and to have a progression of hope.”
Ruth Holbrook, who looks after her husband Maurice (both pictured above) has been involved with the Carers’ Centre and other local services since Maurice’s diagnosis. Because Ruth had worked in health and social care, she knew what support was available. Continue reading Living Well with Dementia→
Q: My mum has recently been diagnosed with dementia and I’m finding it difficult to know how to respond when she behaves out of character or says things that I know aren’t true. I was wondering if there is anything I can read or any training I could do that might help me learn how to deal with this?
Many carers find it difficult to know what to do when a loved one with dementia begins to act differently. We’ve put together some advice for communicating and where to find more information.
Try to make sure you’re being as clear as possible when speaking to someone with dementia.
Use names, i.e. saying ‘it’s me, Jane,’ rather than ‘it’s me.’
Speak in a warm tone and give them extra time to respond to you.
Try giving options instead of open questions, such as ‘would you like chicken or beef for dinner?’ rather than ‘what would you like for dinner?’
Use non-verbal cues like pictures and touch.
Don’t quibble over mistakes or even delusions the person might have, instead try deflecting to a new topic.
Trudy cares for her husband Mark, who has a hereditary eye condition and is registered blind. For many years Trudy “just got on” with caring for Mark, but eventually struggled with her own emotional and physical wellbeing. Trudy says “I felt like I didn’t matter because Mark was the one who was suffering” – but many carers find that when their wellbeing suffers, their ability to care also suffers. Thankfully her GP referred her to our centre, where Trudy received support from our Community Activator service.
Trudy worked with our Community Activators for three months and saw a decrease in her weight and blood pressure. She says “the main thing was realising that I was not alone – the Carers’ Centre really helped me to know that other people were going through something similar”. This one-to-one support even helped Trudy’s confidence, and eventually she felt able to attend breaks run by the Carers’ Centre. Trudy says; “Mark has had a great deal of support and training from Blind Veterans UK. Now I am able to leave him at home and meet my friends again or go shopping without having to worry so much.”
Now that her confidence and wellbeing has improved, Trudy doesn’t just attend breaks with the Carers’ Centre: she often helps out at events and talks. She says; “I want to give something back to the Carers’ Centre as they have done so much for me”. Trudy volunteered to help at our last Craft Fayre in November and most recently lent a hand at our fundraising concert. She also regularly delivers talks to the social work students at Bath University so they can understand the realities of being a carer and volunteers at the RUH Carer Hub, providing support and advice for fellow carers.
Trudy’s devotion to give something back is always so inspiring and we’re so grateful for all of her hard work!
At the Carers’ Centre, we offer each carer the option of a personalised support planning session to ensure they are getting the right support with their caring role and to help identify what services would best help them. These sessions usually have a three week waiting time, and sometimes carers have questions that need answering more urgently. To meet this need, the Carers’ Centre also offers an Information and Advice Line, available on 0800 0388 885 from 10am-1pm each weekday.
This allows carers to ask quick questions or seek guidance on who can bets hep them with an issue. We can answer questions on a range of queries, including telecare, benefits, home aids and financing.
Carers tell us they appreciate getting a quick response and we aim to respond to enquires received outside of our the Line’s opening hours within 2 working days.
Loneliness is a growing problem in the UK, with more and more elderly people facing daily isolation. AgeUK reports that more than 2 million people aged over-75 live alone and over 1 million elderly people go for over a month without speaking to a friend, neighbour or family member. For carers, this isolation can be even worse – the Carers’ Trust say that 83% of carers feel lonely or isolated because of their caring role. The survey also found that 55% of carers felt that they were unable to get out of the house because of their caring responsibilities, while 45% can’t afford to take part in social activities.
Caring for someone day in, day out can be exhausting and emotionally draining. With few support networks for carers around and a lack of people who can empathise, carers often feel they can’t speak to anyone about their problems. We at the Carers’ Centre want to help. That’s why we’re launching our new telephone befriending programme, which should be in full swing by the end of the month.
The telephone befriending service will enable volunteers to speak to carers on the phone every few weeks to see how they’re doing. Andy Graham, our volunteering co-ordinator and lead on the project, has been training our volunteers in telephone befriending. They will start this work in the coming weeks, to the delight of many carers. “Befriending has been shown to be a very helpful, very simple solution to ongoing isolation and loneliness”, Andy says. Many of the befrienders are carers themselves, which we’re hoping will bring a more personal touch to the service. We can’t wait for this project underway and see how many carers we can help.
If you’d like to be a volunteer befriender and help a carer in need, please call the Carers’ Centre on 01761 431388.
Twelve weeks ago, we officially opened the Carer Hub at the RUH in Bath. The Hub is located in the atrium of the hospital and is manned by trained volunteers every weekday. The Hub is a great way to meet new carers and inform people about what we offer at BANES Carer’s Centre.
Many people who enter the RUH leave with a devastating diagnosis that will change their lives forever – but what of the loved ones who accompanied them? There is so much support for people receiving bad news, but often their family members can feel lost, confused or lonely. They may enter the RUH carefree and leave as a carer, unsure of what to do next.
The Carer Hub is there to help.
Volunteers at the Carer Hub can talk to people becoming carers for the first time about what support is on offer for them in BANES. They can also signpost people to external organisations and provide a network of support for a carer who may feel lost and alone. Additionally, the Hub demonstrates the RUH’s commitment to helping carers and making sure they feel supported.
The Hub has faced some challenges – mainly that people assume it is just another seating area rather than a designated space for carers! However, the Hub is becoming increasingly popular with carers using the hospital, as it is a permanent place for carers to visit us if they need to. Volunteers have also said they’ve had many powerful and poignant interactions with carers. This is a great encouragement and we hope the success of the Carer Hub increases even more in 2016.
News and views from Bath North East Somerset Carers Centre