Toughest of times: Our dementia advisers support callers and each other

Alzheimer’s Society’s support line continues to provide practical advice, information and emotional support to thousands of callers.

When coronavirus led to lockdown, people affected by dementia were left facing confusion, anxiety and distress. These continue to make this the toughest of times for many, even as restrictions ease. 

Our Dementia Connect support line has been here for thousands of people in this situation, offering personalised information and advice, emotional support, reassurance or simply a listening ear. 

Already an invaluable service for many people prior to the pandemic, the support line has received an average of 3,000 calls a month since lockdown began in March. 

Fighting fires 

Denise Maguire, Dementia Adviser, manages our support line service in Northern Ireland. She has seen changes in the types of calls received. 

‘At the beginning of the pandemic, many people were looking for practical guidance and support.

‘Worried family members were wondering if they should cancel a care package, people were asking how they could get shopping and medication. It was a lot of firefighting,’ she says.

Denise Maguire

Denise Maguire, Dementia Adviser.

‘As structures began to be put in place,’ says Denise, ‘calls became more about the emotional impact. How can they fill their day? People were looking for guidance on the latest lockdown rules. They wanted to know what they can do to make life better for themselves and their loved ones.’ 

Denise, who has been supporting people affected by dementia over the phone for eight years, provides callers with helpful options. 

‘I use my experience to look at an individual’s circumstances and make suggestions, based on their usual structure, to help them cope and manage,’ she says. 

Isolation and devastation 

Sylv Barnes, Dementia Adviser Supervisor in Warrington, says it’s been a very difficult time for callers and advisers alike. 

‘There’s been isolation and devastation out there,’ she says. ‘A lot of carers are just ringing and crying throughout the calls. Some are having suicidal thoughts.

‘Safeguarding cases have gone through the roof. I’ve never known anything like it in my 15 years at the Society.’

Sylv Barnes

Sylv Barnes, Dementia Adviser Supervisor.

Occasionally a call may last for hours, and it’s after these longer or more challenging conversations that a supervisor will check on the welfare of the adviser. Advisers also provide a lot of support to each other. 

‘Staff are doing an absolutely amazing job under the circumstances,’ says Sylv. ‘We’re one big team and we hope they feel supported.’ 

There to listen 

Some advisers working on the support line, such as Meghan Higgins in the West Midlands, have personal experience of dementia. Her mum is 60 and has young-onset Alzheimer’s, with lockdown posing numerous challenges for the family. 

‘My wonderful colleagues have been there to support me, which means I understand how important it is just to be listened to by people who understand,’ says Meghan. 

‘We like to be the people with the answers, and it has been hard sometimes when there are drastically fewer options at our fingertips, because of other services being limited or closing down.

‘Sometimes, it is just simply being there to listen when people are feeling low, lonely or confused.’

Meghan Higgins

Meghan Higgins, Dementia Adviser.

Meghan is motivated to use her knowledge and understanding of dementia to support callers as best she can. 

‘I want to turn the difficult experience that we have had as a family into something good, and even more so in this time of national crisis,’ she says.

Feeling uplifted 

One carer to call the support line was David Busfield, whose wife has vascular dementia. They are both 79 and were self-isolating during the early months of the pandemic.

David says, ‘Possibly due to this isolation or maybe the normal progression of her condition, she on occasion asks me, “Who are you exactly?” or “Where’s Dave today?” 

‘Occasionally this is accompanied by mood swings and she can be quite aggressive, usually followed by being upset and apologetic.’ 

David decided to call our support line after a stressful couple of days that had left him feeling a little drained and low. 

‘I phoned partly because people had been telling me that I shouldn’t be trying to manage everything on my own, and partly because I wanted to verify some of the things I had read on the Alzheimer’s Society website concerning the progression of dementia,’ he says. 

‘The person I spoke to was the most pleasant and reassuring adviser anyone could hope for – they made me feel confident that this was indeed a support line. I felt very comforted and uplifted, and in a strange sort of way they made me feel revitalised.’ 

As living through a pandemic continues to present new and unexpected challenges for people affected by dementia, our support line is only ever a phone call away. 

As Meghan says, ‘We want to reassure people that we hear you, we understand you and we’re still here for you.’

We need your help

Our support line needs your help to  provide vital advice to everyone who needs it.

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Dementia together magazine: Aug/Sept 20

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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7 comments

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My 89 year old mother has dementia and it seems to be getting worse especially the sundowning. I would like some ideas on how to handle this.

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Hi Sylvia, I'm very sorry to hear that. We have some tips you can read about sundowning here: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…

You can also call our Support Line on 0333 150 3456 if you'd like to talk to one of our advisers about the issue.

Thank you

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My husband having vascular dementia recently passed away on July 4th. March 12th was the last day I visited him Inside at a memory care facility because of this pandemic. The hardest part for me now is the fact that I lost being with him the last four months of his life. It is so hard for a person with dementia to understand why your not visiting anymore. I tried the window visits but I think that made it more confusing for him and even more depressing. I was fond of so many of the people there that rarely had visitors. I would gladly go to visit them now that they have an outside visit two days a week for 25 minutes but it is restricted to only family. There are now seven other people besides my husband that also recently past away and I think one of the reasons for their deaths was depression! They need to know they are loved and not forgotten! That is so important! Memory Care facilities...I think you should re-think your restrictions on visitors and allow people who also care and not just family visitors!

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My husband passed away on 17/08/20 at home in my arms. He has had vascular dementia since 2017 and also had COPD. I refused to send him into hospital or into a care home, although it was terribly difficult and painful to see his condition, with the help of wonderful carers he was able to stay at home.

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I live in France. My aunt is in the UK. I am her P.A. just come back after a visit to her. We have problems. Question who does competency testing , her GP does not carry out this test. Who does

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Hi Maggie,

Thanks for your comment, and sorry to hear about these recent problems with your aunt.

We'd strongly recommend speaking to one of our trained dementia advisers who can learn more about your situation and provide information, advice and support. You can call the Dementia Connect support line on 0333 150 3456 and find more details about it (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful, Maggie.

Alzheimer's Society blog team

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My mother’s dementia declined to psychosis over a matter of hours after 3 and a half months of 'lockdown'. From being able to live at home, she is now in a care home for a 2 week assessment and is on the anti psychotic drug Aripiprazole

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