April 6, 2022 • 34 mins
Maria Cheshire-Allen (Researcher, at Swansea University) is joined by Irene Mortimer, (Swansea Carers Centre) and Jude Dale, (Dementia Friendly Swansea) to discuss how the concept of wellbeing as an enduring ideal defining what it means to live a ‘good life’ interacts with how care in older age is understood and experienced. Together, they reflect on whether, and how the concept translates into everyday experience or the ‘right to be me’ for family carers of older people living with dementia.
About Maria Cheshire-Allen
Maria is a qualitative researcher working at the Centre for Ageing and Dementia Research (CADR)- click here to go to the CADR website- at Swansea University, Wales UK. Her research interests include ageing, care, care ethics, and social care policy. Her research is informed by a previous career working in several policy and campaigning roles for NGOs in Wales, as well as working as a paid carer for older people with dementia. She has published in the areas of theory, policy and empirical research addressing questions concerning the wellbeing of family carers.
Her latest research article ‘No-one was clapping for us’: care, social justice and family carer wellbeing during the COVID-19 pandemic in Wales is published in the International Journal of Care and Caring and available to access here: (click here)
Useful links from this episode
The Dementia Hwb is part of Dementia Friendly Swansea, click here to go to their website or click here for their Facebook page The Dementia Hwb is also on Twitter (click here) and Instagram (click here)
Swansea Carers Centre website: https://www.swanseacarerscentre.org.uk/ Swansea Carers Centre Twitter (click here), Facebook (click here) and Instagram (click here)
The CARE MATTERS Podcast is produced by Dan Williamson at the Centre for Care.
CIRCLE website: http://circle.group.shef.ac.uk/
---Intro/outro music: Ambient Cool by Sunsearcher is licensed under CC BY-SA 3.0
Gain/fade effects applied
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
The Care Matters podcast is
brought to youby the ESRC Centre for Care and Circle,
the Centre for International Researchon Care, Labour
and Equalities.
In this series,
our researcherswelcome experts in the field
and those giving or receiving careto discuss crucial issues in social care.
(00:32):
As we collectively attemptto make a positive difference
to how care is experienced and provided.
Hello and welcometo another episode of Care Matters.
My name is Maria Cheshire-Allen,and I'm a researcher at the Centre
(00:54):
for Aging and Dementia Researchat Swansea University.
And I've also recently completed my Ph.D.
on the question of what does well-beingmean in the context
of care of older peopleand why does it matter?
So in today's episode,we're going to be talking about
this idea of well-beingas it applies to unpaid family care
(01:16):
and particularly carers of older peopleliving with dementia.
So we know that wellbeingis a highly debated and contested issue
and that broadly speakingit usually involves thinking
about living a good lifeor a life of your choosing.
And this usually involves referenceto ideas of balance,
(01:37):
equilibrium, absence of stress or disease.
And often it refers to ideas around
maximization of happiness or flourishing.
And some frameworks of wellbeing
do in fact include carersessential feature of
of living, a good lifeand a leading wellbeing theorist.
(01:57):
Martha Nussbaumincludes care in her list of capabilities.
So in the UK and elsewhereit has become nested
within social care,support programs and in legislation.
So in Englandwe have the CARE Act and here in Wales
we have the Social Servicesand Wellbeing Act.
(02:18):
And so the idea of wellbeing is usedas the central organizing
principal in which state providedcare services are planned and delivered.
And my research really aimed tolook at what
well-being means in the context of unpaidcare of older people.
And so responds to the broader problemof well-being
failuresexperienced by many family carers.
(02:41):
And I was really focused on exploring
and understanding the mismatchbetween the broad legislation and strategy
that aims to promote wellbeingand the consistent evidence
showing significant wellbeing failuresexperienced by many family carers.
And I took a particular wayof understanding wellbeing
(03:01):
and care informedby a broad social justice perspective,
and specifically in relation to wellbeingwhat is known as the capabilities
approach and in relation to understandingcare and ethics of care approach.
And I looked at the research,the policy application,
and most importantly, I carried outsome interviews with qualitative
(03:23):
interviews with family carers themselves
to explore this mismatch a bit further.
So in this podcast,we're going to talk about these issues
in a bit more detail and through thistheme of the right to be me
wellbeing responses for family carersof older people living with dementia.
So I'm really pleased to have with mehere today Irene Mortimer
(03:46):
from Swansea Carers Center and Jude DaleJude, Would you mind introducing yourself?
Oh hi. My name's Jude.
I was a family carerfor my dad who had dementia.
I also volunteer with dementiafriendly Swansea and I've been involved
with the creation of the new dementia hub,which is open in the city center.
I mean, would you mind introducingyourself?
(04:08):
I'm Irene.
I'm the representativefor Swansea care centre.
So as an organization,we support unpaid carers
who make sure that people livein the community,
whether they have a disabilityor a chronic condition.
And our aim is to put a scaffoldingsupport around people
putting servicessuch as welfare benefits, counseling,
(04:32):
respite care activities,wellbeing training.
And it's all about putting those servicesin to shows there's an acknowledgment
there that carers need to havea life of their own and in doing so
creating a resiliencebut also pinpointing and highlighting
to carers that take away the guiltand have some permission to be me.
(04:52):
Time to create,as I said, to create that resilience
and be able to keep on going in their carerole in no other job would you
would you be working 24 hoursa day, seven days a week
without occupationalhealth or annual leave.
Yeah, absolutely.
And I'm really interested.
My research was really interested,like I say, in this mismatch between quite
(05:16):
strong policy rhetoricabout promotion of care, well-being
and the legislationfor for the first time places
rights alongside carers.
And to have this right to awellbeing assessment which can determine
the type of support that they can haveto promote their wellbeing.
(05:37):
And I know the Carers Center andand do you
yourself have been involvedin receiving these wellbeing assessments.
I'm just really interested in your viewsgiven these policies and legislation,
whether the idea of balance or wellbeingis something
that's attainable maybe for some carersand maybe not for others.
(06:00):
And what, what happens when the balanceis tipped in one direction or conversely,
whether it's, you know,
where there's some good news storiesas well, where these
assessments are working well.
Jude, do you
want to say anything about your experienceof receiving The wellbeing assessment?
Well, this is quite a while agonow that we had the assessments
(06:21):
when it was done for my parents, becausemy my mother was my dad's main carer.
So the assessments were then primarilyfor supposed
to be for herwell-being as well as my dad's.
But from what she told me
was that it all revolved around my dad.
So, yes, he did need to have assessments,you know,
(06:45):
for his health needs and emotional needs.
However, when it came to her assessment,it was all about
how she was looking after him.
How she felt was thatshe was just an extension of him.
She wasn't a persontreated in her own right
with her own,you know, likes preferences or anything.
(07:05):
She was just pushed into the backgroundand almost like an extension of him.
And she had the feeling that she wouldalways be there, the back up person.
She just didn't feel like a personin a room in her own right.
So basically what we took from it was thatall they did was was look after dad. But
if people
(07:25):
want us to look after dad,like we're saying, it's a 24 hour role.
How can the carer
and the family be disregarded in this way?
If you want everyone to be looked after
and you want to make sure that everyone'swellbeing is going well,
you know, the career has to be more,more at the forefront.
I'm not saying more needsand the person's being cared for,
(07:48):
but at least on an equal footing.
Yeah, absolutely.
I mean, you're you're involved in actuallycarrying out the assessments now as well
through Swansea Care Centre.
Yes, we are in 2016as part of a pilot scheme
where I was based at the West Hubin Swansea of the Social Services Scheme
and the Healthand Wellbeing Act was quite news
(08:10):
and so there was a lot of motivationto do assessments.
And then with this five year gap,Swansea Carers Centre have now taken on
some of the carers assessmentsand it's exactly that it's for the carer
I think, I think the word assessmentputs a lot of people off,
I've heard carers saying well what if,what if I fail the assessment.
(08:33):
I say you no, this is about you,this is about you
to make sure that you have a lifeof your own as well as your care role.
And it's looking at carershealth, carers emotional
and physical health looking to see,but maintaining relationships.
So some people may have the caredfor coming into their family home,
(08:53):
which upsets the dynamics of the familyitself.
Has it has it affectedthe relationships with friends?
Because there's only so many timesyou can say, no, I can't come
because my care rolebefore people stop coming or ringing.
And then of coursethat upsets the whole support network.
So what we've doneis looked at it holistically.
(09:16):
The carer's
assessment will ask the carersand I have to keep reminding carers
no this is about youbecause as Jude says in
some of the carers assessmentsI think they've been clumped in as one.
The assumption isthat if services are put in
for the cared for,then therefore some of the weight
is taken off your shoulders, Carer,and therefore your life was better.
But that's not enough.
(09:37):
They need to have a quality of life.
One lady said to me, I've forgotten whoI am, which is very sad.
So then it's quite a long process.
It's not something that can be rushedand it's not
something that can be clumped inwith somebody else's assessment.
So we've looked to holistically.
So we've looked at it is the key,which is the key to accessing services.
(10:00):
And we look at the barriersto carers accessing services
or having a life of their ownand then a care plan is formulated
and that care plan could be just the carer
saying to themselves,I give my self permission to be me,
I give myself permissionto have time to meet friends
and give myself equal balanceto the care that I give to be cared for.
(10:24):
So if I take one of the care packagesI've just done,
I've used carer repair because there wererepairs needed in the home, O.T.
assessments, physiotherapy.
So that's up to us to see what's,what's needed both for the carer.
And then it comes to what about you?
And it might be looking for a yoga class,
it might be referring to themto our counseling service
(10:47):
or as I said, itmight be just chat to say, remember, you?
what's going to create real resilience andgive yourself a bit of joy in your life.
What's really interesting, I think
for both of you and as a carer
and someone provides support for carersis why it's so difficult
for people to connect with that idea ofI have this right to
(11:12):
promote and nurture my own wellbeing
and just interested in your views onwhy you think I think that is .
I know we talked about the idea of guilta lot of the time with carers
and I'm really interestedin your views on that.
I know in my particular case
is that we feltthat we didn't feel that we were carers.
(11:35):
It wasn't until we got in touchwith the Swansea Carers Centre
that we actually realised actuallyyou know, we are carers and we do need,
you know, the support that we needed.
We, just in our particular case,
we didn't know services were available.
It was difficult for usto, to find what was available
(11:55):
in Swansea until we got connectedwith the right person
who then told us about the carers center.
And then after that.
Brilliant, just absolutely brilliant
before that.
And even during goingthrough the caring journey with Dad,
we never really regarded ourselvesas carers because we were always
(12:16):
because we considered Dad you know, he'sour Dad you know, is, he's our family.
We're supposed to look after our family,you know,
we're supposed to care forif we're struggling, that's all
pretty much you just feel so bad.
You just feel it'syour own fault that you're not
able to do it properly.
But as Irene said,
(12:36):
we're not supposed to be doing this24 hours a day without all the support
needed, it wouldn't happen in another job,you know?
Or anyway, I'm
not that calling it a job,we did it because, you know, we loved him.
But that support that we could have donewith interventions
a lot earlier probably would have helpedmaking our care journey
a lot easier a lot smoother,and just to just remind people
(13:00):
that there are services out therelike the carer's centre who will help you
just for what you need.
You know, it doesn't have to be likea whole swooping in of needing everything.
If you just need someone to talk to,that's who they're there for.
I definitely identifywith that feeling of guilt, you know,
and need always be in the back of yourmind who's looking after him,
(13:21):
is he okay?
And it's crushing,actually, the responsibility that you feel
for other people looking afterit is absolutely crushing.
And it is something that once you've gonethrough the caring role,
there is no way that you're not changedby it.
I'm completely different personand my mum after doing this caring
(13:44):
and it just just goes into your whole life
and just throws it all upside down.
And one of the reasonsI'm involved in helping
set upthis hub in Swansea was to help people,
if you know where the services are,you know, but if you don't,
there's no way that someone can actuallycommunicate these, these things to you.
(14:07):
We wanted something to come positiveout of the caring journey
that we went through to sayto other people,
You don't have to do the path that we wentdown of guilt and torturing yourself,
which is, you know,
it's is quite a hard thing to talk about,even now.
What needs to be taken from thisis that carers just need to have
(14:29):
confidenceto a) identify that they are carers
and they can do thatwith the help of Irene at the Carer's
Centre and other carer's organizationsaround the country and b) the confidence
also to stand up and go I,I need help because that's not easy to do.
It's not easy to say thatwe actually need help because I think it's
all entrenched in usabout the whole societal aspect of,
(14:51):
you know, you must be carersbecause you are a family when necessary.
Not necessarilyfamily carers are the best.
Thank you.
I think what would be really interestingto know is is Jude
sort of story hereand her experience is something
that you're coming across. Yes.
I would only this Tuesday,we have to drop in one virtual
(15:13):
and one physicaland with every interaction
I've had with carers since weI knew we were doing this podcast.
I've asked them what would they liketo say if they had the chance to speak.
And one lady spoke up in the virtualand Jude was there and the others
reiterated her thoughts thatthere is this guilt or feeling of guilt.
(15:36):
They are saying this, yes, they saw itas their responsibility and no one else's.
And the fact that there also sectorthere are organizations and I have to put
a plug in Swansea Carer's Centre herewhere we've put in, as I said, wellbeing.
Wellbeing
activities and wellbeingI don't like the word training
(15:57):
but groups, peer groupswhere you can create resilience.
So we have things looking at people'smental health and emotional health.
So creating that resilience
very often its dipping your toe as you'renot diving straight into something.
So you need to gothrough those steps of one.
Oh gosh.
So they're putting all these services inso I must be allowed to do activities.
(16:17):
I must be out of a time of my time,
my own, and they might need counsellingto come to that decision
or a buddy systemto come to that decision.
But this one carer was saying this,even though they see
there are services put in there,there are wellbeing
groups, peer groups there to help themfeel stronger and to make that transition
(16:38):
into being them again or even,you know, maybe work opportunities.
That's what they wanted it there is stillis that guilt sitting on their shoulders.
She said she went to an archery activityand she's learning Greek but still.
And while she's enjoyingthat, she's still got Mr.
Guilt sitting on her shoulders.
So I think that's our job as support
(17:00):
workers is to take that guilt away
and make sure carers, you know, asI said, it's not going to go away totally,
but make sure there's respite thereand flexible respite.
So we have flexible respite as in
it could be a family member, neighbouror friend sitting with a cared for person
(17:22):
so that the
person can go to thesewellbeing activities.
And I think that then takes awaythat fear of will
the cared for be safe,will they enjoy themselves?
I think if you know the cared foris enjoying themselves in the company of
the person caring for them, you were goingto enjoy your activity all the more.
And again, it's that guilt isn't it?
(17:43):
it's like I'm having this happy time, but
does that mean That the cared for thinksthat I'm abandoning them?
So I think that's going to carry on.
That's going to carry on and on and on.
And we've to, as work as we have, to carryon saying, no, you have permission to be
you and let's let us with the supportand services to help you do that.
(18:04):
One theme
that I've kind of ran with in my researchis around this idea of burden
and carer burden, which is how it'salmost under problematised.
You know, we just assume thatbeing a carer is going to be associated
with all these negatives and and, youknow, desperately unhappy and some really
(18:24):
harrowing things that people have to gothrough and experience.
And what I've sort of come to some
broad conclusions aboutis that if we try to reframe care
around the idea of risk and vulnerability,then we can actually help.
Carers perhaps, and lots of other thingsthat I argue would be helpful
(18:49):
if we removed this ideaof just automatically associating burden,
then we can see care as somethingthat is of risk to individuals
and families and something thereforethat should be properly supported.
And I was just really interested
and if you agree or disagreeor whether you think there's any, any
kind of merit
in trying to challengethat whole idea of it
(19:11):
being always a burden, and whether we canreframe it around this idea of risk
or vulnerability to risk and to harm
to individuals and families.
I think what we found when we.
Went down the route of having carersinto the house, coming out from,
(19:33):
you know, statutory servicesand third party organisations.
Was that just going down the riskroute was
if there was a problem
where someone couldn't come out,
it was always left to,
you know, my mum or me to look after dad
(19:53):
when we actually were at that time
doingthe caring that they would need, like
say two people to do soor we had to provide it, you know.
So there's actually actual physical riskfor my mum
if she was having to, to assist himto, to, to get out of bed, you know,
because she's obviouslyshe's going to kill me for saying this.
(20:15):
She's quite advanced in her age as well.
And you know, for someone
where generallythe partners around the same age as them,
you have queries from
agencies going, well, we can't we can'twe can't possibly do that.
It's like, well, it'sokay for someone's partner to do it.
Where's, where's the where is the actual
(20:36):
risk assessment for, you know, for them?
Or if there's a problemwith prescribed medication
carers, you know, they pay for carers
who are unable to give them medicationbut it's alright for,
you know, the family carer to do it.
That's just a couple of exampleslike I think of
what happened with us personally,but there's no,
(20:58):
you know, wellbeing checks on a carerthat's there 24 hours a day.
There's no, no one checking them to seehow they are, you know how they're coping.
Are they coping,you know, do they need any any help? No.
I think what we found difficultwas when you have the caregivers coming
in, discussing what they're going to have,
what they're going to doon the next day off, I'm doing this.
(21:19):
Try and get my nails done.
I knew they're going well.
I'm going to be here 24 hours a day.
I'm going to be up 7:00 every morning.
I haven't got a day off.
When when was my day off?
I haven't been away for years.
And again,that goes back into that guilt of,
well, I shouldn't be asking for a day off.
I should be doing this because I'ma family carer But it's okay for paid
(21:41):
carersto have all those protections around them.
But if your family, it's justyou just get the sense of like
when can you go do it anyway aren't you?
You know, and then that guilt then ifsomething does happen and it's your fault.
There is an actual category in the carer'sassessment labeled risk.
(22:01):
So we're looking at risksboth for the cared for the carer.
So it wouldn't be just a caseof pointing out to the carer that
if you do not take up the respiteand take time out, you will be exhausted,
you will be sleep deprivedunless you say yes, please.
And what I think very oftenthe trigger is you say to them,
(22:22):
so what would happen to your mother,your husband, if you became ill?
And that's again, it's turning around,turning it around to making
the needs of the cared for most, isn't it?
The sometimesyou have to use that trigger,
but there is a large
a large part of the careassessment is risk, risk to the carer.
So it might bethe person is unable to meet friends.
(22:46):
Therefore there are threats
to isolation and lonelinesswhich leads to depletion of peer support.
It might be a risk ofnot even not being able to maintain
relationships with a husband and childrenbecause they're seen as that
because they're caring for their parentsand that's affected other relationships.
And very often carerswon't see that happening.
(23:06):
It's incrementalas they as the responsibilities
become larger,the depletion in their own networks
and in their own lives,it becomes quite significant at the end.
So yeah, it is
part of the carers assessmentand it's good to point that out to carers.
I think it's a case ofif you do not have rest then
(23:28):
you would risk of having a crisis
and your emotional physical health it'sthat thing of putting you putting
your own life belt on
so that you can support and save others.
So I think if you use those analogies,then again, because the carers are so used
to thinking about somebody elseand that's the turn around.
(23:50):
I know this is probably a really crude
thing to to ask you to do, butwhat would be the sort of a single thing
or one thing that would help
carers or promote this idea of wellbeing?
If you could change one aspectperhaps of the carers assessment
for you, Irene what do you feelbased on your experience directly, caring?
(24:13):
would that be one thing?
Oh, is thatis that too much of a difficult ask?
I think probably
if you could do one thing,which would be just to ask people
how they are,and just to check up on them.
I know it's not as simple as all that,but just having that,
(24:35):
the availability of contacting someoneor having them contact you.
Just to check in,because at the time when you have
the assessments,things might be okay as they are then.
But who would you contact again?
If something happens, you may not needa whole massive assessment again,
but just to have someonethat you can ring.
(24:58):
You would who would knowyour whole story and everything
so you don't have to keep repeating it toeveryone would be, you know, helpful.
That's what I found anyway.
I mean,Irene knows a lot more carers than I do so
but you know, just,I just would really appreciate it.
I mean Mum would have done just appreciatejust someone, just checking in.
No, I agreeJude it's that ongoing support.
(25:21):
Thankfully,I've got the luxury to be able to do that
in my role, but that's what we need with
as a services, as people,you know, as others have said to us.
when we're doing care assessments.
They didn't know who they were openingtheir hearts to and stories to again
was a carers assessmentcarers are able to put their story.
But as we all know,the story changes day by day, especially
(25:44):
if you're caring for somebodywith a chronic condition or dementia. it
is that line is that is the abilityto be able to ring
somebody up and not go through your storyall the time.
And we always say social workers.
Now, people will say,I'm not assigned a social worker.
We don't have a family social worker.
(26:05):
And I have to point out that most socialworkers are assigned to a case issue.
And once that issue is resolvedin many cases,
and there is a timeline for that,the case is closed.
And when something else happens, theythen have to go back to the central point.
They have to go to in Swansea andthen they have to go through their story.
(26:25):
So if that thing of somebody knowing youand hope you get on,
you get on with that people/personand trust that person.
And eveneven if that person can't find a solution,
they can do the ringing for youor they can put you
they can refer you to somebodywho can help you with that.
(26:45):
Because at the end of the day,when you are so exhausted,
very often you're sleep depleted,even ringing,
it doesn't matter how eloquent somebody isor how informed somebody is
when their emotions and exhaustionattached to even a phone call
or waiting for somebody to answerthe phone seems like a monumental task.
So I think it's such ongoing support.
(27:08):
I feel I should point outthat we also care
for carersafter their care role has finished.
So that might be, you know,building up their own lives again.
It becomesso much part of people's identity.
So we don't close.I don't like close, close cases.
We also for carers it's ongoingwhether you know the cared for
(27:29):
is still arounduntil where you know what else happened.
But we don't closecases, we don't close people.
And I think
we're really fortunateand lucky in Swansea that we've got you,
I mean and, and your colleagues in SwanseaCarers Center and all the volunteers
and in many waysyou've been taking matters
(27:52):
into your own handsalong with Jude and others,
and you've developedand been working really hard to set up
what's called a dementia hubin Swansea City Center.
So just really interested injust hearing a bit more about that
and how that came frombecause like we say, you've kind of
(28:12):
there's no getting away from the factthat things are very difficult
across the country,you know, UK wide in terms of social care
provision and support for carers.
And we know, we know that situationis there for everyone
and it's really tricky for peopleat the moment, even more so now.
But like we say in Swansea we have,
we have been very luckyto have some campaigning going on
(28:36):
and you've taken mattersinto your own hands with the dementia hub.
So could you just tell us a little bitabout that as well?
Well, Dementia Hubcame about from originally from a group
that I was a member of as wellfrom dementia friendly Swansea,
which was set up in 2014 by Hannah Davies.
So we were getting queriesall the way through COVID
(28:58):
lockdowns about what support was around.
And when we kind ofwe kind of all got back together again
last year, and Hannah had the ideaof let's set up somewhere
centralwhere people can access information
about dementia services in Swansea,
because what we've noticed from since 2014till now has always been a problem
(29:22):
with communication ofhow do you tell people these services
if you know, like I said,you know so once you're in you're
in the know so
so with support from Irenefrom the Carers Center
and also from the SwanseaBay Health Board, Swansea
Council,the Alzheimer's Society, Age Committee,
Swansea University and University, TrinitySt Davids.
(29:46):
We've managedto, we've taken over the old Thorntons
shop in the Quadrant Center in Swansea,and that was due
to going through the Open Foundry,which is a social enterprise group,
and we set up as a five weekinitial trial at the end of January.
We've got funding until the end of March.
Hopefully we're going to be carrying on.
(30:07):
So it's a one stop place where people cancome in to get information
on dementia and it could be anyonethat's affected by dementia.
So if anyone's concerned about their own
health, their own memory,what could be excellent
for a family memberor even a friend or neighbor or colleague
(30:27):
come in and our volunteerswill give you information
that you need on servicesin and around Swansea.
So it could be statutory services,so we could be giving people information
about services by Swansea Councilor again for the Carers Center.
We don't provide
any services as such therewe signpost everything.
(30:49):
So it's been a massive collaboration.
It's actually with more organisationsthan what I've just listed.
So it's, it's just amazinghow it's all fallen into place.
And the feedback we've had is brilliant.
In the first monthswe've helped over 220 people.
Most people actually interactedwith our volunteers.
So people that just come in just havea little bit of a nosey and left.
(31:11):
They haven't been included, but it'speople who've actually had an inquiry.
So we've given us a lot of informationon the amount of people
that didn't knowthe Carers Center was there
when they're in receipt of carersallowances was amazing.
It was just quite scary actually.So we've.
You would hope that.
(31:32):
With this.
What we're doing in there will help peoplejust access more services.
Benefits, everything. Just information.
Anything they might need. Just.Just pop in, you know?
And they can pop in because it's openseven days a week, 11 till three
with the Saturday,I think is the busiest day again,
because wewe we're looking at setting it all up.
(31:54):
People are struggling to access servicesif they're working during the week
or be able to phonethings are open office hours.
It's fantasticand I think it's been described
as well as sort of taking dementiato the high street.
You know, it's it'ssomewhere where people can see
they're passing by the shop here,not expecting to really interact,
(32:14):
to engage with these issues,but being personally touched by them.
And they can actually sort of accesswith this support
going about their daily,daily routines anyway.
I know.
I mean, that's made a big differenceto how you can deliver
your services as welland being able to reach a lot more people.
Absolutely.
(32:36):
So it's in the quadrant,busy thoroughfare for people.
I mean, space.
It has a big sign saying dementia hub.
It's made dementia part of everyday life.
It's creating awarenessas well as an information resource.
And as Jude say, many who access SwanseaCarers Centre services have not gone
any further or accessed through Alzheimers[society]
(32:58):
and I think carers ration themselvesso they they access one service
and say thank you very much don'tand it's our job.
I think that's the other thing isthis brought all the agencies together.
We're working as a wholewe I think we are starting to put those
blue dotsin between the different services
and working as a unit on the dementiafriendly forum.
(33:21):
And it'sthanks to people like Jude and Hannah.
It's their tenacity and its their storiesthat has made this happen.
Hannah DAVIES To quote Hannah, she said,I just want to make sense of
of a past story.
And that's, you know, she'sshe has a full time job and a full mum
(33:42):
but Jude and Hannah would be knockingon people's doors and saying saying things
which other people too frightened to sayand look where its got us.
So it's nice to speak sometimesto carers basically.
And actually many carers are now coming inas volunteers into the hub
and some say that gives themanother identity.
Yeah, absolutely.
(34:03):
And it's just it's so positiveand and especially
now in this climate,it is just so, so desperately needed. So.
Thank you, both, It's been really,really interesting
and really engaging conversation,and I'm sure
we're lucky we can continue itafter this podcast as well.
Thank you to the new Center for Care,which is a new research
(34:25):
center funded by the ESRCAnd I'm sure you can access
and find outmore information on their website.
And so that's the end of this podcast.
And thank you, everyone.
The Care Matters podcast is
brought to youby the ESRC Centre for Care and Circle,
the Centre for International Researchon Care, Labour
and Equalities.
In this series,
our researcherswelcome experts in the field
and those giving or receiving careto discuss crucial issues in social care.
(00:32):
As we collectively attemptto make a positive difference
to how care is experienced and provided.
Hello and welcometo another episode of Care Matters.
My name is Maria Cheshire-Allen,and I'm a researcher at the Centre
(00:54):
for Aging and Dementia Researchat Swansea University.
And I've also recently completed my Ph.D.
on the question of what does well-beingmean in the context
of care of older peopleand why does it matter?
So in today's episode,we're going to be talking about
this idea of well-beingas it applies to unpaid family care
(01:16):
and particularly carers of older peopleliving with dementia.
So we know that wellbeingis a highly debated and contested issue
and that broadly speakingit usually involves thinking
about living a good lifeor a life of your choosing.
And this usually involves referenceto ideas of balance,
(01:37):
equilibrium, absence of stress or disease.
And often it refers to ideas around
maximization of happiness or flourishing.
And some frameworks of wellbeing
do in fact include carersessential feature of
of living, a good lifeand a leading wellbeing theorist.
(01:57):
Martha Nussbaumincludes care in her list of capabilities.
So in the UK and elsewhereit has become nested
within social care,support programs and in legislation.
So in Englandwe have the CARE Act and here in Wales
we have the Social Servicesand Wellbeing Act.
(02:18):
And so the idea of wellbeing is usedas the central organizing
principal in which state providedcare services are planned and delivered.
And my research really aimed tolook at what
well-being means in the context of unpaidcare of older people.
And so responds to the broader problemof well-being
failuresexperienced by many family carers.
(02:41):
And I was really focused on exploring
and understanding the mismatchbetween the broad legislation and strategy
that aims to promote wellbeingand the consistent evidence
showing significant wellbeing failuresexperienced by many family carers.
And I took a particular wayof understanding wellbeing
(03:01):
and care informedby a broad social justice perspective,
and specifically in relation to wellbeingwhat is known as the capabilities
approach and in relation to understandingcare and ethics of care approach.
And I looked at the research,the policy application,
and most importantly, I carried outsome interviews with qualitative
(03:23):
interviews with family carers themselves
to explore this mismatch a bit further.
So in this podcast,we're going to talk about these issues
in a bit more detail and through thistheme of the right to be me
wellbeing responses for family carersof older people living with dementia.
So I'm really pleased to have with mehere today Irene Mortimer
(03:46):
from Swansea Carers Center and Jude DaleJude, Would you mind introducing yourself?
Oh hi. My name's Jude.
I was a family carerfor my dad who had dementia.
I also volunteer with dementiafriendly Swansea and I've been involved
with the creation of the new dementia hub,which is open in the city center.
I mean, would you mind introducingyourself?
(04:08):
I'm Irene.
I'm the representativefor Swansea care centre.
So as an organization,we support unpaid carers
who make sure that people livein the community,
whether they have a disabilityor a chronic condition.
And our aim is to put a scaffoldingsupport around people
putting servicessuch as welfare benefits, counseling,
(04:32):
respite care activities,wellbeing training.
And it's all about putting those servicesin to shows there's an acknowledgment
there that carers need to havea life of their own and in doing so
creating a resiliencebut also pinpointing and highlighting
to carers that take away the guiltand have some permission to be me.
(04:52):
Time to create,as I said, to create that resilience
and be able to keep on going in their carerole in no other job would you
would you be working 24 hoursa day, seven days a week
without occupationalhealth or annual leave.
Yeah, absolutely.
And I'm really interested.
My research was really interested,like I say, in this mismatch between quite
(05:16):
strong policy rhetoricabout promotion of care, well-being
and the legislationfor for the first time places
rights alongside carers.
And to have this right to awellbeing assessment which can determine
the type of support that they can haveto promote their wellbeing.
(05:37):
And I know the Carers Center andand do you
yourself have been involvedin receiving these wellbeing assessments.
I'm just really interested in your viewsgiven these policies and legislation,
whether the idea of balance or wellbeingis something
that's attainable maybe for some carersand maybe not for others.
(06:00):
And what, what happens when the balanceis tipped in one direction or conversely,
whether it's, you know,
where there's some good news storiesas well, where these
assessments are working well.
Jude, do you
want to say anything about your experienceof receiving The wellbeing assessment?
Well, this is quite a while agonow that we had the assessments
(06:21):
when it was done for my parents, becausemy my mother was my dad's main carer.
So the assessments were then primarilyfor supposed
to be for herwell-being as well as my dad's.
But from what she told me
was that it all revolved around my dad.
So, yes, he did need to have assessments,you know,
(06:45):
for his health needs and emotional needs.
However, when it came to her assessment,it was all about
how she was looking after him.
How she felt was thatshe was just an extension of him.
She wasn't a persontreated in her own right
with her own,you know, likes preferences or anything.
(07:05):
She was just pushed into the backgroundand almost like an extension of him.
And she had the feeling that she wouldalways be there, the back up person.
She just didn't feel like a personin a room in her own right.
So basically what we took from it was thatall they did was was look after dad. But
if people
(07:25):
want us to look after dad,like we're saying, it's a 24 hour role.
How can the carer
and the family be disregarded in this way?
If you want everyone to be looked after
and you want to make sure that everyone'swellbeing is going well,
you know, the career has to be more,more at the forefront.
I'm not saying more needsand the person's being cared for,
(07:48):
but at least on an equal footing.
Yeah, absolutely.
I mean, you're you're involved in actuallycarrying out the assessments now as well
through Swansea Care Centre.
Yes, we are in 2016as part of a pilot scheme
where I was based at the West Hubin Swansea of the Social Services Scheme
and the Healthand Wellbeing Act was quite news
(08:10):
and so there was a lot of motivationto do assessments.
And then with this five year gap,Swansea Carers Centre have now taken on
some of the carers assessmentsand it's exactly that it's for the carer
I think, I think the word assessmentputs a lot of people off,
I've heard carers saying well what if,what if I fail the assessment.
(08:33):
I say you no, this is about you,this is about you
to make sure that you have a lifeof your own as well as your care role.
And it's looking at carershealth, carers emotional
and physical health looking to see,but maintaining relationships.
So some people may have the caredfor coming into their family home,
(08:53):
which upsets the dynamics of the familyitself.
Has it has it affectedthe relationships with friends?
Because there's only so many timesyou can say, no, I can't come
because my care rolebefore people stop coming or ringing.
And then of coursethat upsets the whole support network.
So what we've doneis looked at it holistically.
(09:16):
The carer's
assessment will ask the carersand I have to keep reminding carers
no this is about youbecause as Jude says in
some of the carers assessmentsI think they've been clumped in as one.
The assumption isthat if services are put in
for the cared for,then therefore some of the weight
is taken off your shoulders, Carer,and therefore your life was better.
But that's not enough.
(09:37):
They need to have a quality of life.
One lady said to me, I've forgotten whoI am, which is very sad.
So then it's quite a long process.
It's not something that can be rushedand it's not
something that can be clumped inwith somebody else's assessment.
So we've looked to holistically.
So we've looked at it is the key,which is the key to accessing services.
(10:00):
And we look at the barriersto carers accessing services
or having a life of their ownand then a care plan is formulated
and that care plan could be just the carer
saying to themselves,I give my self permission to be me,
I give myself permissionto have time to meet friends
and give myself equal balanceto the care that I give to be cared for.
(10:24):
So if I take one of the care packagesI've just done,
I've used carer repair because there wererepairs needed in the home, O.T.
assessments, physiotherapy.
So that's up to us to see what's,what's needed both for the carer.
And then it comes to what about you?
And it might be looking for a yoga class,
it might be referring to themto our counseling service
(10:47):
or as I said, itmight be just chat to say, remember, you?
what's going to create real resilience andgive yourself a bit of joy in your life.
What's really interesting, I think
for both of you and as a carer
and someone provides support for carersis why it's so difficult
for people to connect with that idea ofI have this right to
(11:12):
promote and nurture my own wellbeing
and just interested in your views onwhy you think I think that is .
I know we talked about the idea of guilta lot of the time with carers
and I'm really interestedin your views on that.
I know in my particular case
is that we feltthat we didn't feel that we were carers.
(11:35):
It wasn't until we got in touchwith the Swansea Carers Centre
that we actually realised actuallyyou know, we are carers and we do need,
you know, the support that we needed.
We, just in our particular case,
we didn't know services were available.
It was difficult for usto, to find what was available
(11:55):
in Swansea until we got connectedwith the right person
who then told us about the carers center.
And then after that.
Brilliant, just absolutely brilliant
before that.
And even during goingthrough the caring journey with Dad,
we never really regarded ourselvesas carers because we were always
(12:16):
because we considered Dad you know, he'sour Dad you know, is, he's our family.
We're supposed to look after our family,you know,
we're supposed to care forif we're struggling, that's all
pretty much you just feel so bad.
You just feel it'syour own fault that you're not
able to do it properly.
But as Irene said,
(12:36):
we're not supposed to be doing this24 hours a day without all the support
needed, it wouldn't happen in another job,you know?
Or anyway, I'm
not that calling it a job,we did it because, you know, we loved him.
But that support that we could have donewith interventions
a lot earlier probably would have helpedmaking our care journey
a lot easier a lot smoother,and just to just remind people
(13:00):
that there are services out therelike the carer's centre who will help you
just for what you need.
You know, it doesn't have to be likea whole swooping in of needing everything.
If you just need someone to talk to,that's who they're there for.
I definitely identifywith that feeling of guilt, you know,
and need always be in the back of yourmind who's looking after him,
(13:21):
is he okay?
And it's crushing,actually, the responsibility that you feel
for other people looking afterit is absolutely crushing.
And it is something that once you've gonethrough the caring role,
there is no way that you're not changedby it.
I'm completely different personand my mum after doing this caring
(13:44):
and it just just goes into your whole life
and just throws it all upside down.
And one of the reasonsI'm involved in helping
set upthis hub in Swansea was to help people,
if you know where the services are,you know, but if you don't,
there's no way that someone can actuallycommunicate these, these things to you.
(14:07):
We wanted something to come positiveout of the caring journey
that we went through to sayto other people,
You don't have to do the path that we wentdown of guilt and torturing yourself,
which is, you know,
it's is quite a hard thing to talk about,even now.
What needs to be taken from thisis that carers just need to have
(14:29):
confidenceto a) identify that they are carers
and they can do thatwith the help of Irene at the Carer's
Centre and other carer's organizationsaround the country and b) the confidence
also to stand up and go I,I need help because that's not easy to do.
It's not easy to say thatwe actually need help because I think it's
all entrenched in usabout the whole societal aspect of,
(14:51):
you know, you must be carersbecause you are a family when necessary.
Not necessarilyfamily carers are the best.
Thank you.
I think what would be really interestingto know is is Jude
sort of story hereand her experience is something
that you're coming across. Yes.
I would only this Tuesday,we have to drop in one virtual
(15:13):
and one physicaland with every interaction
I've had with carers since weI knew we were doing this podcast.
I've asked them what would they liketo say if they had the chance to speak.
And one lady spoke up in the virtualand Jude was there and the others
reiterated her thoughts thatthere is this guilt or feeling of guilt.
(15:36):
They are saying this, yes, they saw itas their responsibility and no one else's.
And the fact that there also sectorthere are organizations and I have to put
a plug in Swansea Carer's Centre herewhere we've put in, as I said, wellbeing.
Wellbeing
activities and wellbeingI don't like the word training
(15:57):
but groups, peer groupswhere you can create resilience.
So we have things looking at people'smental health and emotional health.
So creating that resilience
very often its dipping your toe as you'renot diving straight into something.
So you need to gothrough those steps of one.
Oh gosh.
So they're putting all these services inso I must be allowed to do activities.
(16:17):
I must be out of a time of my time,
my own, and they might need counsellingto come to that decision
or a buddy systemto come to that decision.
But this one carer was saying this,even though they see
there are services put in there,there are wellbeing
groups, peer groups there to help themfeel stronger and to make that transition
(16:38):
into being them again or even,you know, maybe work opportunities.
That's what they wanted it there is stillis that guilt sitting on their shoulders.
She said she went to an archery activityand she's learning Greek but still.
And while she's enjoyingthat, she's still got Mr.
Guilt sitting on her shoulders.
So I think that's our job as support
(17:00):
workers is to take that guilt away
and make sure carers, you know, asI said, it's not going to go away totally,
but make sure there's respite thereand flexible respite.
So we have flexible respite as in
it could be a family member, neighbouror friend sitting with a cared for person
(17:22):
so that the
person can go to thesewellbeing activities.
And I think that then takes awaythat fear of will
the cared for be safe,will they enjoy themselves?
I think if you know the cared foris enjoying themselves in the company of
the person caring for them, you were goingto enjoy your activity all the more.
And again, it's that guilt isn't it?
(17:43):
it's like I'm having this happy time, but
does that mean That the cared for thinksthat I'm abandoning them?
So I think that's going to carry on.
That's going to carry on and on and on.
And we've to, as work as we have, to carryon saying, no, you have permission to be
you and let's let us with the supportand services to help you do that.
(18:04):
One theme
that I've kind of ran with in my researchis around this idea of burden
and carer burden, which is how it'salmost under problematised.
You know, we just assume thatbeing a carer is going to be associated
with all these negatives and and, youknow, desperately unhappy and some really
(18:24):
harrowing things that people have to gothrough and experience.
And what I've sort of come to some
broad conclusions aboutis that if we try to reframe care
around the idea of risk and vulnerability,then we can actually help.
Carers perhaps, and lots of other thingsthat I argue would be helpful
(18:49):
if we removed this ideaof just automatically associating burden,
then we can see care as somethingthat is of risk to individuals
and families and something thereforethat should be properly supported.
And I was just really interested
and if you agree or disagreeor whether you think there's any, any
kind of merit
in trying to challengethat whole idea of it
(19:11):
being always a burden, and whether we canreframe it around this idea of risk
or vulnerability to risk and to harm
to individuals and families.
I think what we found when we.
Went down the route of having carersinto the house, coming out from,
(19:33):
you know, statutory servicesand third party organisations.
Was that just going down the riskroute was
if there was a problem
where someone couldn't come out,
it was always left to,
you know, my mum or me to look after dad
(19:53):
when we actually were at that time
doingthe caring that they would need, like
say two people to do soor we had to provide it, you know.
So there's actually actual physical riskfor my mum
if she was having to, to assist himto, to, to get out of bed, you know,
because she's obviouslyshe's going to kill me for saying this.
(20:15):
She's quite advanced in her age as well.
And you know, for someone
where generallythe partners around the same age as them,
you have queries from
agencies going, well, we can't we can'twe can't possibly do that.
It's like, well, it'sokay for someone's partner to do it.
Where's, where's the where is the actual
(20:36):
risk assessment for, you know, for them?
Or if there's a problemwith prescribed medication
carers, you know, they pay for carers
who are unable to give them medicationbut it's alright for,
you know, the family carer to do it.
That's just a couple of exampleslike I think of
what happened with us personally,but there's no,
(20:58):
you know, wellbeing checks on a carerthat's there 24 hours a day.
There's no, no one checking them to seehow they are, you know how they're coping.
Are they coping,you know, do they need any any help? No.
I think what we found difficultwas when you have the caregivers coming
in, discussing what they're going to have,
what they're going to doon the next day off, I'm doing this.
(21:19):
Try and get my nails done.
I knew they're going well.
I'm going to be here 24 hours a day.
I'm going to be up 7:00 every morning.
I haven't got a day off.
When when was my day off?
I haven't been away for years.
And again,that goes back into that guilt of,
well, I shouldn't be asking for a day off.
I should be doing this because I'ma family carer But it's okay for paid
(21:41):
carersto have all those protections around them.
But if your family, it's justyou just get the sense of like
when can you go do it anyway aren't you?
You know, and then that guilt then ifsomething does happen and it's your fault.
There is an actual category in the carer'sassessment labeled risk.
(22:01):
So we're looking at risksboth for the cared for the carer.
So it wouldn't be just a caseof pointing out to the carer that
if you do not take up the respiteand take time out, you will be exhausted,
you will be sleep deprivedunless you say yes, please.
And what I think very oftenthe trigger is you say to them,
(22:22):
so what would happen to your mother,your husband, if you became ill?
And that's again, it's turning around,turning it around to making
the needs of the cared for most, isn't it?
The sometimesyou have to use that trigger,
but there is a large
a large part of the careassessment is risk, risk to the carer.
So it might bethe person is unable to meet friends.
(22:46):
Therefore there are threats
to isolation and lonelinesswhich leads to depletion of peer support.
It might be a risk ofnot even not being able to maintain
relationships with a husband and childrenbecause they're seen as that
because they're caring for their parentsand that's affected other relationships.
And very often carerswon't see that happening.
(23:06):
It's incrementalas they as the responsibilities
become larger,the depletion in their own networks
and in their own lives,it becomes quite significant at the end.
So yeah, it is
part of the carers assessmentand it's good to point that out to carers.
I think it's a case ofif you do not have rest then
(23:28):
you would risk of having a crisis
and your emotional physical health it'sthat thing of putting you putting
your own life belt on
so that you can support and save others.
So I think if you use those analogies,then again, because the carers are so used
to thinking about somebody elseand that's the turn around.
(23:50):
I know this is probably a really crude
thing to to ask you to do, butwhat would be the sort of a single thing
or one thing that would help
carers or promote this idea of wellbeing?
If you could change one aspectperhaps of the carers assessment
for you, Irene what do you feelbased on your experience directly, caring?
(24:13):
would that be one thing?
Oh, is thatis that too much of a difficult ask?
I think probably
if you could do one thing,which would be just to ask people
how they are,and just to check up on them.
I know it's not as simple as all that,but just having that,
(24:35):
the availability of contacting someoneor having them contact you.
Just to check in,because at the time when you have
the assessments,things might be okay as they are then.
But who would you contact again?
If something happens, you may not needa whole massive assessment again,
but just to have someonethat you can ring.
(24:58):
You would who would knowyour whole story and everything
so you don't have to keep repeating it toeveryone would be, you know, helpful.
That's what I found anyway.
I mean,Irene knows a lot more carers than I do so
but you know, just,I just would really appreciate it.
I mean Mum would have done just appreciatejust someone, just checking in.
No, I agreeJude it's that ongoing support.
(25:21):
Thankfully,I've got the luxury to be able to do that
in my role, but that's what we need with
as a services, as people,you know, as others have said to us.
when we're doing care assessments.
They didn't know who they were openingtheir hearts to and stories to again
was a carers assessmentcarers are able to put their story.
But as we all know,the story changes day by day, especially
(25:44):
if you're caring for somebodywith a chronic condition or dementia. it
is that line is that is the abilityto be able to ring
somebody up and not go through your storyall the time.
And we always say social workers.
Now, people will say,I'm not assigned a social worker.
We don't have a family social worker.
(26:05):
And I have to point out that most socialworkers are assigned to a case issue.
And once that issue is resolvedin many cases,
and there is a timeline for that,the case is closed.
And when something else happens, theythen have to go back to the central point.
They have to go to in Swansea andthen they have to go through their story.
(26:25):
So if that thing of somebody knowing youand hope you get on,
you get on with that people/personand trust that person.
And eveneven if that person can't find a solution,
they can do the ringing for youor they can put you
they can refer you to somebodywho can help you with that.
(26:45):
Because at the end of the day,when you are so exhausted,
very often you're sleep depleted,even ringing,
it doesn't matter how eloquent somebody isor how informed somebody is
when their emotions and exhaustionattached to even a phone call
or waiting for somebody to answerthe phone seems like a monumental task.
So I think it's such ongoing support.
(27:08):
I feel I should point outthat we also care
for carersafter their care role has finished.
So that might be, you know,building up their own lives again.
It becomesso much part of people's identity.
So we don't close.I don't like close, close cases.
We also for carers it's ongoingwhether you know the cared for
(27:29):
is still arounduntil where you know what else happened.
But we don't closecases, we don't close people.
And I think
we're really fortunateand lucky in Swansea that we've got you,
I mean and, and your colleagues in SwanseaCarers Center and all the volunteers
and in many waysyou've been taking matters
(27:52):
into your own handsalong with Jude and others,
and you've developedand been working really hard to set up
what's called a dementia hubin Swansea City Center.
So just really interested injust hearing a bit more about that
and how that came frombecause like we say, you've kind of
(28:12):
there's no getting away from the factthat things are very difficult
across the country,you know, UK wide in terms of social care
provision and support for carers.
And we know, we know that situationis there for everyone
and it's really tricky for peopleat the moment, even more so now.
But like we say in Swansea we have,
we have been very luckyto have some campaigning going on
(28:36):
and you've taken mattersinto your own hands with the dementia hub.
So could you just tell us a little bitabout that as well?
Well, Dementia Hubcame about from originally from a group
that I was a member of as wellfrom dementia friendly Swansea,
which was set up in 2014 by Hannah Davies.
So we were getting queriesall the way through COVID
(28:58):
lockdowns about what support was around.
And when we kind ofwe kind of all got back together again
last year, and Hannah had the ideaof let's set up somewhere
centralwhere people can access information
about dementia services in Swansea,
because what we've noticed from since 2014till now has always been a problem
(29:22):
with communication ofhow do you tell people these services
if you know, like I said,you know so once you're in you're
in the know so
so with support from Irenefrom the Carers Center
and also from the SwanseaBay Health Board, Swansea
Council,the Alzheimer's Society, Age Committee,
Swansea University and University, TrinitySt Davids.
(29:46):
We've managedto, we've taken over the old Thorntons
shop in the Quadrant Center in Swansea,and that was due
to going through the Open Foundry,which is a social enterprise group,
and we set up as a five weekinitial trial at the end of January.
We've got funding until the end of March.
Hopefully we're going to be carrying on.
(30:07):
So it's a one stop place where people cancome in to get information
on dementia and it could be anyonethat's affected by dementia.
So if anyone's concerned about their own
health, their own memory,what could be excellent
for a family memberor even a friend or neighbor or colleague
(30:27):
come in and our volunteerswill give you information
that you need on servicesin and around Swansea.
So it could be statutory services,so we could be giving people information
about services by Swansea Councilor again for the Carers Center.
We don't provide
any services as such therewe signpost everything.
(30:49):
So it's been a massive collaboration.
It's actually with more organisationsthan what I've just listed.
So it's, it's just amazinghow it's all fallen into place.
And the feedback we've had is brilliant.
In the first monthswe've helped over 220 people.
Most people actually interactedwith our volunteers.
So people that just come in just havea little bit of a nosey and left.
(31:11):
They haven't been included, but it'speople who've actually had an inquiry.
So we've given us a lot of informationon the amount of people
that didn't knowthe Carers Center was there
when they're in receipt of carersallowances was amazing.
It was just quite scary actually.So we've.
You would hope that.
(31:32):
With this.
What we're doing in there will help peoplejust access more services.
Benefits, everything. Just information.
Anything they might need. Just.Just pop in, you know?
And they can pop in because it's openseven days a week, 11 till three
with the Saturday,I think is the busiest day again,
because wewe we're looking at setting it all up.
(31:54):
People are struggling to access servicesif they're working during the week
or be able to phonethings are open office hours.
It's fantasticand I think it's been described
as well as sort of taking dementiato the high street.
You know, it's it'ssomewhere where people can see
they're passing by the shop here,not expecting to really interact,
(32:14):
to engage with these issues,but being personally touched by them.
And they can actually sort of accesswith this support
going about their daily,daily routines anyway.
I know.
I mean, that's made a big differenceto how you can deliver
your services as welland being able to reach a lot more people.
Absolutely.
(32:36):
So it's in the quadrant,busy thoroughfare for people.
I mean, space.
It has a big sign saying dementia hub.
It's made dementia part of everyday life.
It's creating awarenessas well as an information resource.
And as Jude say, many who access SwanseaCarers Centre services have not gone
any further or accessed through Alzheimers[society]
(32:58):
and I think carers ration themselvesso they they access one service
and say thank you very much don'tand it's our job.
I think that's the other thing isthis brought all the agencies together.
We're working as a wholewe I think we are starting to put those
blue dotsin between the different services
and working as a unit on the dementiafriendly forum.
(33:21):
And it'sthanks to people like Jude and Hannah.
It's their tenacity and its their storiesthat has made this happen.
Hannah DAVIES To quote Hannah, she said,I just want to make sense of
of a past story.
And that's, you know, she'sshe has a full time job and a full mum
(33:42):
but Jude and Hannah would be knockingon people's doors and saying saying things
which other people too frightened to sayand look where its got us.
So it's nice to speak sometimesto carers basically.
And actually many carers are now coming inas volunteers into the hub
and some say that gives themanother identity.
Yeah, absolutely.
(34:03):
And it's just it's so positiveand and especially
now in this climate,it is just so, so desperately needed. So.
Thank you, both, It's been really,really interesting
and really engaging conversation,and I'm sure
we're lucky we can continue itafter this podcast as well.
Thank you to the new Center for Care,which is a new research
(34:25):
center funded by the ESRCAnd I'm sure you can access
and find outmore information on their website.
And so that's the end of this podcast.
And thank you, everyone.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Nikki Glaser Podcast
Every week comedian and infamous roaster Nikki Glaser provides a fun, fast-paced, and brutally honest look into current pop-culture and her own personal life.