Podcast Episode: World Dementia Awareness Month 2014
Category: Mental health
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
MD - Michelle Drumm
YS - Yvonne Stewart
AMMD - Anne Marie MacDonald
AL - Anne Love
RB - Rosalyn Barclay
AMMG - Ann-Marie McGregor
MD September is World Dementia Awareness Month, and to mark it, Iriss.fm met up with the directors of Dementia Scotland Consultancy and Training and a group of carers and professionals in the area of dementia care. We firstly spoke to Yvonne Stewart and Anne Marie MacDonald about Dementia Scotland Consultancy and Training. It is followed by a discussion on current dementia care, the challenges, interventions, and how dementia care might look in the future. Other participants in the discussion include Ann Love, Rosalyn Barclay and Anne-Marie McGregor.
YS Anne Marie and I worked together in the Practice Development Team at Alzheimer Scotland. Annmarie had a role around training all the staff around the Promoting Excellence Framework, so over a thousand staff throughout Scotland, and my role was a national leader in self directed support. There came a point when the team needed to be restructured and we all took a redundancy package, but Anne Marie and I were really keen in particular to remain involved in dementia care, and decided that we would set up Dementia in Scotland.
AM We train staff, because we have this knowledge about the Promoting Excellent Framework, we trained staff according to the requirements of the framework and they might be staff from care homes or other agencies, and what we do is ... various cities in Scotland, we'll get a location, put on a days training and that allows providers just to send one or two members of staff at a time, because they have a great deal of difficulty freeing up staff to attend training. So, you know, we can train staff from a number of providers all at the one time in various cities. So we have some training coming up in Glasgow, Edinburgh, Inverness, Aberdeen, so these dates are booked at the moment.
The day that we offer to staff currently, there's an awful lot in that day, it ranges from environmental changes that can be made to make an environment less disabling for people with dementia, we do a wee bit about quality and diversity as well, what is dementia, and we cover the four most prevalent types of dementia, and what that means for the person supporting a person with, for example, frontal temporal dementia, because the needs of somebody with frontal temporal will be quite different from the needs of somebody with Alzheimer's disease. So it's just informing staff about these differences and what the needs of the person may be, you know, because dementia care, it can't be generic for the various different types of dementia, of course there are likenesses between people, but there's also a lot of differences that staff need to be aware of. So we cover that. And also we have a wee bit about distressed and stressed behaviour, and that allows staff themselves to bring along situations that they, in their workplace, may be finding difficult to cope with, and so we will work through that and we will try and find solutions for staff members.
YS We also run a number of dementia specific events, so we have a couple of events coming up with Jill Phillips and Dundee United Football Club, with her co-production approach, which is called 'Whose Shoes', and that's really, the event in Dundee is really about ensuring that people with dementia and their families have a voice and a say in what it means to live well with dementia. Our aim is to make sure more people in Scotland, living with a diagnosis of dementia, are living as well as possible as they can, with as much information as possible, to enable them to live as well as possible for as long as possible and improve their quality of life. And we believe through having knowledge, information and support enables them to do that. Letting them know what's available out there, technology, self directed support, information resources, and letting them know about what their rights are and community resources, so that they can take active choices about improving their quality of life. We also run a number of carers events as well, we done one last night with Bellaston Kerr (?), and really that's about us being able to give back to people as well, we don't charge for that event, but it's about giving us an opportunity to share our knowledge, information and experience with people, so that they can take that back into their own lives and hopefully have more better days than bad days.
AL My name is Ann Love, I work with People with Dementia in Supported Housing, I have had issues in the past with a mother in law, who, at that time it wasn't ... it was pre senile dementia, she was 51, so I have been quite involved with dementia over the years, seen how it's changed and great to see it changing all the time and getting more, we can talk about it now, we couldn't talk about it then. And my own mother at the moment has Alzheimer's.
RB My name is Ros Barclay, I am a practice nurse in Glasgow, but I also have a friend who has got dementia at the moment and I am finding it quite a struggle to help her, although she has 2 sons who help her too, but I seem to be the one who seems to do quite a lot for her as well, and also I have patients who have dementia in my surgery, so ... trying to deal with them is quite hard sometimes as well, giving them information.
AMMD I am Anne Marie McDonald, I am a director of Dementia Scotland Consultancy and Training. My interest is in the rarer dementias and also younger people with dementia. I have worked for quite a number of years supporting people who have been under 65, and their families. So that's a particular interest of mine.
AMMG Hi, I am Ann-Marie McGregor, and I work as an advocacy worker. My involvement with dementia is mainly through work and supporting people who are affected by dementia. Even though we did have dementia in the family, my father in law was diagnosed with vascular dementia, it's only now that I realised I should have really asked more questions. I am all for promoting advocacy and making sure that people are aware of the possible difficulties they could face later in life if they have been assessed as lacking capacity.
YS I am Yvonne Stewart, I am from Dementia Scotland Consultancy and Training. I have obviously had lots of experience of supporting people living with dementia, various types of dementia and their families, but I have also had personal experience as well of supporting a loved one, not just with dementia, but lots of sort of core morbidity issues as well. My mother in law was hearing impaired, visually impaired and had cancer, and also living with a diagnosis of dementia, so I have also had other family members as well, but she was probably the closest person that I was involved in supporting her and providing care and during hospital admissions and things as well. And I think, for me, it's very rare to find anyone whose lives haven't been touched with dementia.
MD What sort of interventions are out there at the moment, what are people doing to improve peoples lives, or is there anything happening, is there just more need to happen?
AMMG For some people, it's getting the diagnosis in the first place. They may have indications that something isn't quite right and probably their first point of call would be to go to their GP, and I don't know if Ros, you know you said sometimes you see patients in your capacity as a Practice Nurse, they have probably all seen the booklet, you know, Memory Problems, and I think sometimes it can take a long time for the diagnosis to come and maybe, depending on the persons circumstances, if they are on their own, they may not seek help the same as if they have got a partner or if they have got children.
AMMD I would say in terms of interventions for people, it really depends where they live and if it's an area of high population, of course there will be more available. For people in rural communities, care and activities may just be down to family members and there may be very little support, so interventions really, I would say, it's down to where you live. In terms of interventions for carers, I would say these are thinner on the ground, overall, you know, of course we are more aware of people living with dementia and more has been done in recent years to support them, but I still think carers are left out in the cold, and myself, as a carer, at that time I had no opportunity to go and see what my rights were or what benefits were available to me, because caring is a 24 hour a day job and to go and seek benefits was a kind of luxury that I could not afford, even though it meant living on the breadline, and that's the situation that I think a lot of carers are in, and from our experience of just even last night, we did an information session with carers, and just their lack of knowledge about the system, how to negotiate the system, what rights are available, what benefits are available, so I think while we may be addressing interventions for people with dementia, we are certainly not anywhere near meeting the needs of carers at this point in time.
RB I have quite a lot of ethnic minority patients in my surgery and I find it's difficult finding somewhere for them to go to get help, they don't want to out the house, they like to stay in their house, they don't want to mix with British people, and they find it difficult, there's one gentleman in particular who won't go to anything and his wife can't leave him, and I think that's ... maybe I just can't find information on that, but I think that's something that we need to look into.
AMMG Sometimes with people in those circumstances, it is a language barrier, and there's culture barriers as well, and as you say, they are maybe not used to maybe going to services or being able to inform ... in this day and age, people would like to tell you, oh you can go online, you can get everything online, but not everybody is online and for some people, that is a practical thing, for other people it could be a cost thing, as you said, Anne-Marie, in your caring role, you know, if you are providing that care for somebody and maybe also looking after children or maybe also going to your job, you don't have to the time to look for things online. But I think it's important that, as the first kind of point of seeking health service, I think it's important that GP, and that includes also the reception staff, have enough time for patients to enable them to build up a wee picture of maybe something is not quite right with this particular patient. And we have all been in the surgeries and there are hundreds of leaflets, and it's overwhelming for us, people who have capacity, let alone for somebody sitting who is maybe not sure and can't write, you know, make sense of the world round about them.
MD On suggesting that perhaps there is a huge dependency on families in dementia care...
AL I think it's mostly families, families, friends ... your situation, it's friends, rather than actual paid support, paid staff. I think carers are saving the government a fortune by doing that and they are not getting repaid in any way. One of the ones that particularly gets me is the ... if I move in with my Mum or she moves in with me, we instantly lose our council tax bill rises, because I am on my own so I have a 25% discount, if my Mum moves in, I lose that, you know there's now 2 of us in the house, so that's not helpful at all. The benefits system is a maze for people. At the moment, we are not looking that way but I know lots of other people who are and it's not changing fast enough I don't think, it's been highlighted at least in the last 10 years that people are getting exhausted, and in the long run, it's going to cost more because these people can't go on forever doing the caring. And I think because we have got inroads in that we are able to keep people healthier longer, physically, so they are living longer, so the carer is caring longer and I think it's just going to go on and on like that until ... they definitely need help.
We have just lost a day centre in our work, 38 people have lost a place, but also their carers have lost that day where they got to do whatever they had to do, shopping, 5 minutes to sit down in peace, they have lost that, the social workers are trying to find them other places, but the waiting list of like 42 people in front of them, and we have just added to it, is not good. There's new ones being built, but they are not built yet. There's one lady with Alzheimer's who attended 4 days, she's just going to sit at home for those 4 days, she was out, she was socialising, she had a bit of fun, she had a cooked meal, now her daughter, who is just recovering from cancer surgery, is going to have to step back in and look after her, it's not fair.
YS There are so many issues wrapped up in what Ann is saying there, there's the issue about we know that caring for someone with Dementia, we have the research, we have the evidence that says that the carer is highly likely to become physically unwell themselves, and in many instances the carer will actually die before the person with dementia. To me, having that knowledge and not being able to affect any change, and we keep putting carers needs and carers services on the back burner, thinking, well we just don't have the money, we just don't have the resources. Well how much money and how much resources are going in to then medical interventions, hospitalisations, medications, to then repair the damage that has been done to somebody who is living on the edge and not sleeping. Quite often people with dementia turn night into day at certain stages in their illness, we all know what sleep deprivation looks like and feels like and we all know the impact on your health of sleep deprivation. The stress, the anxiety of watching a loved one with a progressive and ultimately terminal illness, and we don't provide the psychological services for carers to come to terms with the diagnosis. We expect somehow carers to have all the knowledge, skills and experience to become a dementia carer, when we don't provide them with that knowledge, information and support, and until we address some of these issues we will remain in this vicious circle where people are becoming ill, because as dementia progresses, what happens is, the carer takes on more and more and more of the day to day support of the person without even realising, it's progressive, it just gently happens. One day you are taking your Mum or Dad out shopping and you are supporting them to go shopping, the next day they are no longer able to go shopping, and you are doing it, you are doing the housework, you are paying the bills, you are providing personal care, you are arranging every aspect of their life, keeping them safe, keeping them well, and that happens so gradually that eventually it becomes, as Annmarie said, a 24/7 job before you have realised it, and we need much more earlier intervention for carers to keep them well. There's things that we know that work effectively for both the carer and for the person with dementia that would avoid these crisis interventions, and then we throw lots of money at the problem once we have created the problem, so we need to think much more preventively about how we move forward. But some of the things that have been proven, again through research and evidence is things like mindfulness training, so enabling people to live more in the moment and not living with the constant grief, and finding a way of finding peace and joy in today and not worrying about yesterday or tomorrow, there is also psychological interventions, counselling, cognitive behavioural therapy, group support, we know that these are all effective interventions, and providing the knowledge, skills and training to carers to actually avoid them maybe hurting their back lifting and moving somebody, or providing a level of care around changing the environment, which could enable the person with dementia to be remaining much more independent. So it's about helping carers to know about what are the self management techniques, so that they don't overstep before the person with dementia needs that level of support, because it's a natural reaction to keep the person safe, so sometimes what happens is, somebody gets a diagnosis of dementia one day, the day before they were quite happily going about their life, they might have had some challenges, but they were still going maybe taking the dog for a walk, going down to the shop for a newspaper. The day after the diagnosis, life can completely change, and that comes from a place of families feeling I have got to keep that person safe. So then they stop saying, will you make me a cup of tea, it's more, oh I will make you a cup of tea, oh I am going to go down to the shop ... no, I will go down to the shop for you, and so the persons life and their life opportunities become smaller and smaller, and that's not necessarily always the right thing for the person with dementia. But unless the family get the right support at that very early stage, that's just a snowball that continues throughout the progression of dementia.
There is a one year post diagnostic ... supposed to be a one year post diagnostic support programme, but it's not fully being delivered throughout Scotland.
AL It's very fragmented, depending on where you live, depending on who you speak to, it's really fragmented, it's getting worse by the minute too, because if you need a wheelchair you go to your doctor and he requests a wheelchair, but if you need a cushion for it, you go to the district nurses, they get that and it comes posted out to you, but people don't know that obviously until ... at that time they have gone to the Red Cross, somebody has told them you can hire one from the Red Cross, so they have done that, not realising they can have their own chair there all the time. Just this week we have been informed that anybody who needs bed tables, anything that they would normally have got, from what we called Equip, is now handed over and they have to buy their own, it's to do with the amalgamation of the health service and the social work departments, so we got a memo telling us they have to buy their own now. People don't know where to go to buy these things, so we have leaflets, well there you are, but a lot of these are sales people who will sell you the dearest product, which is not necessarily what you need, find yourself out of money, with something that's no use, nobody else is going to take it back, you know it's difficult and it's getting harder. I think something central, a central place where people can go, "my Mum or my Dad has had a diagnosis of dementia, what do I do, what do I do first, where do I go for help?"
AMMD Often after diagnosis, people are just left, they are not even given as much as a leaflet as to what the next step is, and it's just by luck if they approach services themselves. These individuals can just be left and nobody is making referrals on for them, you know, but back to the carers issue, I think it should just be a matter of course that carers get a carers assessment through their local authority, just as the person with dementia gets an assessment of their needs, so too does the carer need an assessment, without having to ask for it. Often carers don't know their rights, that they are entitled to a carer's assessment. I have been speaking recently to someone who is caring for their mother, this person is on benefits, they are not getting carers allowance, they are travelling daily to visit the mother and the cost of that travel is coming out of this persons unemployment benefit, nobody is offering any sort of support. Now, that's really bad for peoples mental health to be operating under such stressful circumstances, so I would have to agree and say that a One Stop Shop, where people with dementia and their carers can go, but not just to get emotional support, also there needs to be experts out there who know the financial system and the benefits system and can advise accordingly. Ann there was saying that people don't move in with their parents because they think they will be penalised through the council tax, in fact what would happen in that circumstance is the person with dementia is disregarded for council tax, so the person who was moving in would still retain that 25% discount and be regarded as one person living in that household. So it's knowing who knows these things, you know, and it's allowing carers and people with dementia, access to this knowledge, you know, it's too sporadic, it's not across the country, there should be one place that they know, in their town or cities, they can go and get all this information and move on with their lives. But I would also follow on from what Yvonne has said, in terms of interventions for carers, just having their own life for part of the week would be great, you know they have their own social life and that's really important that they keep with that, rather than being regarded as a carer, you know, to get support coming in to allow them to lead their life, them connecting with their friends is probably the best therapeutic intervention there could possibly be. That said, peer support groups have also been shown to be extremely therapeutic for people who are caring because nobody quite understands like somebody else who is in that situation, so there are a number of things that can happen, but I would say overwhelmingly, a carer being allowed to lead their own life, with support, is the best medicine that there can be.
AMMG Certainly in my experience as an advocacy worker, I have come across many spouses or somebody's son or daughter who weren't aware about the services out there, you know, if you are a carer, and I always encouraged them to contact their local carer centre and explain that, because this is a place where they can get that peer support, they can get access to maybe free or very reduced alternative therapies, like aromatherapy and reiki, and what have you, because we all know, and I say we, also as we society, and we politicians, and we directors .... from the directors right down to the support workers who are doing the one to one work, we all know if the carer is able to look after themselves, they are able to care, and unfortunately quite often when a person maybe comes into contact with social work, it is at that crisis point, where a carer maybe feels they can no longer manage or the person with dementia is so badly affected that they find themselves detained under the mental health act, some people have to be moved into residential care and they have been able to live their life and to deal with things, but their condition has progressed and their behaviour has then presented difficulties. And I think we also have to consider the stigma that's attached to actually being old and having a condition, and it's not something that's ... quite often you don't really get a very positive feeling about elderly people, per se, and as you said before, people are living longer, people are therefore retiring more early and I attended a national conference about planning for retirement and to do with getting older and taking on carer responsibilities, and many people who attended there were maybe retired or people who were providing care for relatives or for their husbands or wives, and one of the discussions was that, in general, we don't really plan properly for retirement, and maybe the ideas or plans that we have as an individual have kind of went out of the window because of somebody's husband or wife or daughter or sons condition, and feeling that you are then responsible for helping to look after them. As you say, that whole carer role probably creeps in, or it's done out of love and the different tasks and things people try to arrange, you know, the carer might feel, well who else is going to do it? But, with the likes of assisting your spouse with personal care, you know, they don't have to do that if they don't want to do that, or if the person themself doesn't want their spouse to do that, they can contact social work, ask for an assessment, and a care package should be put in place to provide that kind of assistance to somebody. Unfortunately there is such a demand, and that is sometimes where advocacy can come in to also try and put more pressure on the social work to get this assessment done, because in the meantime, that person with dementia and their carer is feeling as if nobody cares any more, and when a person gets a diagnosis, as you say there should be a year post diagnosis support, some people don't even know about that, I mentioned this in a recent meeting and there were people who didn't know about that, and it's quite remarkable that people don't know about that, but anyway ... So in recent weeks, people here in Scotland may have noticed there's adverts on the TV to do with arranging a power of attorney and there's also been adverts in the subway and different locations, I think that's a good thing because it gets people thinking about what is that all about and it gets people to think about, what if I find myself not able to make decisions about my welfare or my finance, but mainly your welfare. I know from the fact that Roslyn and I are good friends that that's something you have looked at recently, to set up a power of attorney, which enables a person to identify somebody that they trust 100%, somebody that they feel knows exactly what's important to the person, and somebody who is able to then legally, to act on your behalf, should you find yourself unable to do that.
There are so many difficulties when a person, apart from the actual physical and emotional effects of a person being a cognitive condition that makes them, in services speak 'incapacitated', things like phoning the bank, things like paying bills, and if the bill is in for instance the husbands name, the wife can't phone up and say I want to cancel this, my husband is in hospital, all those practical things. And also as a power of attorney, then you have the legal right to decide what is to happen to the person who has granted that to you. And that may involve having to decide that that person maybe has to go into residential care, and the alternative is, if people don't do that and social work becomes involved and a person is not able to maybe manage at home any more due to the risks involved and the level of care that they need, the social work or a family member may then apply to become somebody's legal guardian for welfare and for finance, if appropriate. But that whole process can take a number of months, the person might be "stuck", because you can't see that on the radio, stuck in the hospital, and sometimes for people, that in itself can be a very traumatic experience, to find themselves in hospital in that kind of setting where they don't know what's going on. Maybe if you want to, Ros, say about your friend and how you have seen, you know, the effects of your friend being detained in hospital?
AL Just on that point, sometimes it's best to ask if you can get free legal aid to set up a power of attorney, so it doesn't necessarily have to be an expense, so find a registered lawyer who is registered with the Law Society, provides legal aid cover, go into the Law Society website, find a solicitor who specialises in Power of Attorney and Guardianship, find out which ones provide legal aid and then narrow your list down from there, and then it's potentially something that you can get relatively low cost or free, but it can make a huge difference to the choice and control that the person with dementia has throughout their illness.
RB Just following on from what Anne-Marie said, this friend of mine, whose son has set up a power of attorney, it's taken so long to be processed through Falkirk, I mean they have been waiting months now, it's been written for a while but it's just taking so long and she is now stuck, well she is waiting to be put into a home, but they haven't got power of attorney yet, so she is trying to say, well I want to go home, I want to go here and I want to go there, but because the power of attorney has not been processed, it seems to be taking an awful long time.
AMMG If your friend had organised power of attorney before she was ...
RB She can't, it's done, it's just getting processed, you know it's got to be registered in Falkirk, and that's taking a while.
AMMD Yes, just what Ros is saying there, highlights the importance of addressing this issue right away, when somebody gets a diagnosis. The first thing that should be done is going to see a lawyer and thinking about power of attorney, getting it out the way and then it need never be thought about again until it's required. For staff who are supporting the family member it is really important that they provide information on the condition when it's required, not before and not too late, but obviously enquiring with the person and their family when they would like that information. Because having an understanding of the condition equips people in how to deal with it, you know, as Yvonne had said earlier, there's interventions that can occur that can be really helpful, and if people don't understand the condition they won't understand what interventions could possibly work. Also allowing the person themselves to think about what they want in the future, and this is all part I suppose of the 5 pillars of post diagnostic support, you know, working towards planning for the future, but also dealing with life in the here and now as well, how does the person want o spent their time, these are all things that you would be, if you were supporting somebody with dementia, you would be discussing with them.
MD On what dementia care might look like in 2025, they had this to say...
AMMD Well we have got Ann-Marie here, who is from Holland, and I think what I would like to see for dementia care is more dementia villages rather than care homes, the dementia village that's out in Holland at the minute where there's shops and everything is on site, and it's so homely, and it's just such a brilliant environment. I would love to see that replicated, not just in Scotland but throughout the world. And Yvonne had showed me a video of Alzheimer's Australia, and it's about supporting men with dementia in Australia, and what they have got there is the dementia shed, where men go and they don't necessarily talk about dementia, but they do things, so things that men all do in sheds, build things, have bits of wires and hammers, and then there's a camaraderie amongst the men, so men are not forced into a model of support that suits women, they have their own model that suits men, and in the men's shed you will find people with a diagnosis of dementia and also carers, male carers, and it's fantastic, you know you can see it on YouTube, maybe you would put the link on, Michelle, to your website, because it's just ... if we had that replicated, if there was a man shed in every town, it would just be fantastic. That's the kind of care that I would like to see, care that reflects the needs of individuals, rather than shoe horning people into care homes. I mean nobody in this planet wants to go and live in a care home, why is that, you know? We should all be dying to go into care homes because it's providing something that we would love, so the nature of care has to change completely to suit what we want, rather than ...
YS Why, when you go into a care home, is it the only environment where you have absolutely no choice and control? You know? You end up in hospital and the next minute you are moved to the next available bed in the next available care home, you have no ... it's like monopoly, do not pass go, do not collect your belongings and go straight there. People are meant to be given a choice of where they go, they are meant to have visits before they go, and quite often that just doesn't happen. And then when you get there, your accommodation is provided, your care is provided by that facility, you lose all your welfare benefits, you may even have to sell your home and contribute your pension towards the cost.
AMMG As far as visions for the future, I mean I would like to see more funding put into providing information and care and support for people affected by dementia and their carers. I would like to see society as a whole taking a more positive approach towards elderly people in general, recognising the contributions that people have made in their lifetime. I would like to see staff in care homes doing more work in relation to memory books and memory work, because having visited various care homes, and to be fair obviously it's only a small time that I spent there, there doesn't appear to be a huge array of that type of activity for people, and we know that a simple thing like making a memory book can really help the person, and the person can get enjoyment out of that as well, so it's a bit disappointing not to see any visible evidence of that when you visit somebody in their room and certainly probably that's also to do with training and resources and I am sure all the staff do their very best in their day to day work caring for people with dementia and people with other physical disabilities.
I would like to see everybody recognise the importance of setting up a power of attorney, and also for us, as individuals, to take responsibility for our health, and we have read about all the different benefits that having a healthy lifestyle and a good diet, different things regular exercise can have and can reduce our chances to develop dementia, but mostly I think I want people that have dementia to feel that they are being listened to and that they can contribute in a little way, and that they don't feel as if they are forgotten about in hospital, in long term hospital setting. It would be great if there was more activities going on for people that they might be able to enjoy, because it's really important to try and see at all times, to see the person and not a condition.
YS It doesn't have to be big, expensive solutions, what I see day and daily, is money being put into services and resources and activities which makes not a jot of difference to the person with dementia or their family. We need to stop doing what doesn't work and we need to invest in what we know does work, and we need to reconstruct some of the systems that we have developed around dementia care and we need to look at the value that people with dementia have in our society. And if we start with that person, each individual with dementia, I always say this in training, if you start with the person and you build support around them, you will never go wrong, you will never go wrong. But what we do is we build generic services and systems that lump people together because they have a condition called dementia, there's over 100 different types of dementia, so it's like trying to treat different types of cancer giving the same solution, it doesn't work. We need a different way, we need a different vision which is about the individual, their needs and responding to how that is, and right now we have the inflexibility built in within our system that doesn't allow us to do that. In regards to residential care services, which is, I mean there's around 80% of the population within our residential care homes just now are people with dementia, and that's an astounding figure. And yet we have staff working within those environments who have very little or no knowledge of caring for someone with dementia. Quite often when we tell them that there's over 100 different types of dementia, they are completely unaware, and things that they can do to engage and change the environment within their care home that makes it more dementia friendly, but beyond ... that's a sticking plaster over a gaping wound. What we have is a system that doesn't meet the outcomes and if we are putting people somewhere ... if you put me somewhere with 100 other people that I don't know, that I have no choice over how I got there, or where I am going, I don't have my ... necessarily my belongings and the things that are important to me, my friends, my family, my community, I am going to be somebody that is labelled, and I hate using this word ... as challenging behaviour, but what I will be is, I will be stressed and I will be distressed and I will be lashing out because I am unhappy in that environment. And we need to change that, because if it's myself that develops dementia in the future, I want a system that I am happy to move to somewhere that is actually going to be a safe and enabling environment for me, where I am still going to have fun, I am still going to have purpose and meaning in my life, I am still going to be in my community surrounded by my family and friends, I can't imagine anything worse than somebody saying that my husband has to go and live in one care home while I have to go and live in another. I think that's a form of cruelty, and I think we have to look at these things, these are happening day and daily to people, and I think it's a fundamental human right for people to have the choice and control over were they live, and I think people with dementia, we need to hear their voices more and that's what will change the future.
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License