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Care during the pandemic - take the survey & share your experiences

SophieD

Administrator
Staff member
Mar 21, 2018
2,429
London
*this survey is now closed*

Hi everyone,

We've received word of the below opportunity for carers to be able to share experiences of care during the pandemic.

Alzheimer’s Society wants to understand the impact that the coronavirus pandemic has had on families providing informal care for a loved one with dementia. We know that caring can be a very rewarding experience and the right thing for many families, but we know the pandemic and subsequent lockdown has brought challenges.

We would like to invite all carers to share their experiences in our latest Care During the Pandemic Survey, to understand how you have coped during the lockdown and beyond.

The results will help us push for change at the highest level and influence the government to put the needs of people affected by dementia first. To anonymously take part visit:

The survey closes on 27th August 2020 (at 23:55).

Thanks,

Sophie
 
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Baker17

Registered User
Mar 9, 2016
713
I would have filled in the survey but because my husband is in a residential home I can’t. I think this is unfair because I am still involved in my husband’s care, well at least I was until the lockdown and frankly I’ve had a nightmare trying to ensure he is having good care. So I don’t think this area should have been ignored.
 

SophieD

Administrator
Staff member
Mar 21, 2018
2,429
London
Sorry to hear that @canary, I'll pass along this feedback. Have you managed to try it since and has it worked for you?

@Baker17 That's an excellent point and I will ensure the team who created and developed this survey are aware. Thank you for your feedback.
 

Henkerann

Registered User
Aug 28, 2019
18
suffolk
I wasn't aware of the survey, but like Baker 17 my mum is in very assisted living, she has her own flat in a building run by the scheme, the building is owned by the Council. There were questions raised about permanent carers being tested but I was told that they weren't classed as a care home so wouldn't be tested however the scheme are sticking to a strict regime of visiting like a care home. previously no visits, now garden visits only, not practical for numerous reasons. Whilst I understand keeping the residents safe, for many of them they are isolated. I don't know what questions were in the survey, before lockdown I had visited my Mum (There is only her and me) every day for the past 5 years. I can only say not being able to visit has been detremental for my Mum, she has dementia and mixed Alzheimer’s, I don't think she knows me now as a result of not seeing me regularly. The impact on me has been enormous. I know I'm not the only one in this situation but it is truly depressing and quite honestly I think of little else, when I do think of her I just end up in tears.
I have written to my MP raising my concerns and placed it on your forum in the hopes that others might write to their MP's also. I haven't received a reply yet.
Please request another survey encompassing all who care for elderly relatives.
 

anxious annie

Registered User
Jan 2, 2019
410
Hi @Henkerann , like you and @Baker17 , I too am not able to complete the survey as my mum is in a care home.. I am also struggling with the current in humane visiting restrictions. I don't know if you are aware but there is a petition started by Jenny Morrison at Rights for Residents , and a Facebook page for the group where you can read some heartbreaking stories, but also realise that you are not alone. You can sign the petition at www.change.org/Please-Let-Me-See-My-Family
(I can't remember if the link is underscore or hyphen, so you may have to try both if you can't get the Facebook page).
I have also written to my MP, and Matt Hancock, Helen Whately (health and social care), and Boris, but no replies. Just automated response saying these things take time. But sadly, time is not something my mum has. She gets too cold doing garden visits, and window visits are a struggle too.
I do hope that the big charities with their funding and media contacts will be able to gain publicity to shame the Government into changing guidelines.
 

TNJJ

Registered User
May 7, 2019
1,727
cornwall
I filled in the survey. Dads needs have changed slightly. They thought he had Covid at one time(he didn’t ) and he didn’t have symptoms. He was vomiting. (He has CKD ) . They just up and left him for a week. I had to stay lying on the floor as no spare bedroom. No Duty of Care applied by them.
 

Baker17

Registered User
Mar 9, 2016
713
Hi @Henkerann , like you and @Baker17 , I too am not able to complete the survey as my mum is in a care home.. I am also struggling with the current in humane visiting restrictions. I don't know if you are aware but there is a petition started by Jenny Morrison at Rights for Residents , and a Facebook page for the group where you can read some heartbreaking stories, but also realise that you are not alone. You can sign the petition at www.change.org/Please-Let-Me-See-My-Family
(I can't remember if the link is underscore or hyphen, so you may have to try both if you can't get the Facebook page).
I have also written to my MP, and Matt Hancock, Helen Whately (health and social care), and Boris, but no replies. Just automated response saying these things take time. But sadly, time is not something my mum has. She gets too cold doing garden visits, and window visits are a struggle too.
I do hope that the big charities with their funding and media contacts will be able to gain publicity to shame the Government into changing guidelines.
@anxious annie I've filled the petition in and shared it with friends and family who have also signed x
 

anxious annie

Registered User
Jan 2, 2019
410
Great news about the petition @Baker17 , the more people who do this, the closer it gets to the Government listening to and acting upon all our concerns X
 

Henkerann

Registered User
Aug 28, 2019
18
suffolk
There was a full page article in The Sunday Times yesterday (sept 6th) entiled Care-home plague of loneliness is breaching loved ones human rights. The opening lines state 'The fear of being sued by families of residents killed by covid is limiting visits. Ministers are urged to step in'.
The personal stories echo the plight of all those governed by the restrictions in place in residential settings.
I am going to sign the petition, hopefully someone, somewhere will try and understand that our loved ones don't have time on their sides.
 

anxious annie

Registered User
Jan 2, 2019
410
Thanks for sharing @Henkerann , there was an article in The Mail on Sunday 5th September too "" End the obscenity of denying families the basic human right to hug their dying loved one ".
The article shared stories of those not just at end of life not being able to hug ( as most care homes I thought allow this), and also mentions John's Campaign the legal challenge.
The story is starting to get through, we just need more support from the big dementia charities with their funding and media contacts to push the plight of our loved ones into the spotlight.
Let us hope they will listen and act .