PC terminology-Will TP entries have to comply to this terminalogy?

[Shedrech]

yes, indeed
palsal's original post quotes from and discusses a Blog which is concerned with language used by those in the media
so the thread has been moved to the forum 'Dementia- related news and campaigns' as it's discussing dementia in the media

 

[nitram]

A link to the source document may be of use to some.
https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/
also
https://www.alzheimers.org.uk/sites/default/files/2018-09/Dementia Friendly Media and Broadcast Guide.pdf
and
https://www.alzheimers.org.uk/sites/default/files/2018-09/Positive language guide_0.pdf?_ga=2.57438890.1012243028.1536326325-874379048.1536326325

 

[Unhappy15]

I am struggling with a dilemma. As you know, I want this terrible situation realistically portrayed and have tried when I wrote to the Times, believe me I was in your face forthright. The other side is the awful effect on our mental health of living in the dark side. Again, as you probably know, I am a psychotherapist although I work with the young who are a different kettle of fish.
In other words, confronting the hell of the existence is what we need to do to get action, but this will have a difficult effect on our own mental health. This is partly why the think positively philosophy is prevalent. I know, I know, it is difficult to think positively about this situation but what I am saying is that it is difficult for us always to live in the hellish reality in our minds ... Help me out here guys, tell me you understand some of this. I feel equipped to put this point of view only because my experience was so dreadful. Kindred.

 

[Sirena]

Sorry, that got cut short. Anyway safeguarding woman very interested and practical, wanting to take steps to remove me from situation UNTIL she asked me what was wrong with OH. And the minute I said dementia I could hear all interest go and she made excuses to end the call. I was left feeling that as a wife of a PWD my life was not worth much. It was a hard lesson. Kindred.

Kindred that is just terrible. It is such a harsh illustration of how dementia is viewed in some quarters - “well we can’t do anything about that so we will leave you to get on with it”. It is such a lonely place to be and we all know how hard it can be to get any help, but for help not to be forthcoming when you own life is at risk is disgraceful. I can quite understand if you don’t want to ‘campaign’ about it any further though, given what you have been through. I think many carers are so depleted by caring they have no will or energy to do more.

Re your point about PWDs/their families being shunned, as you say they already are to an extent -as @padmag says, as soon as it begins to ‘show’. My mother had several supposedly close friends who drifted away - in some cases, they didn’t even drift, they hot-footed it. Only one friend still contacts her at the care home - she has compassion and understanding partly because she’s a lovely person, and partly because she cares for her own husband who has Alzheimers.

@Bunpoots, I know what you mean about wondering if you’re next…

 

[B72]

I am struggling with a dilemma. As you know, I want this terrible situation realistically portrayed and have tried when I wrote to the Times, believe me I was in your face forthright. The other side is the awful effect on our mental health of living in the dark side. Again, as you probably know, I am a psychotherapist although I work with the young who are a different kettle of fish.
In other words, confronting the hell of the existence is what we need to do to get action, but this will have a difficult effect on our own mental health. This is partly why the think positively philosophy is prevalent. I know, I know, it is difficult to think positively about this situation but what I am saying is that it is difficult for us always to live in the hellish reality in our minds ... Help me out here guys, tell me you understand some of this. I feel equipped to put this point of view only because my experience was so dreadful. Kindred.

 

[kindred]

Kindred that is just terrible. It is such a harsh illustration of how dementia is viewed in some quarters - “well we can’t do anything about that so we will leave you to get on with it”. It is such a lonely place to be and we all know how hard it can be to get any help, but for help not to be forthcoming when you own life is at risk is disgraceful. I can quite understand if you don’t want to ‘campaign’ about it any further though, given what you have been through. I think many carers are so depleted by caring they have no will or energy to do more.

Re your point about PWDs/their families being shunned, as you say they already are to an extent -as @padmag says, as soon as it begins to ‘show’. My mother had several supposedly close friends who drifted away - in some cases, they didn’t even drift, they hot-footed it. Only one friend still contacts her at the care home - she has compassion and understanding partly because she’s a lovely person, and partly because she cares for her own husband who has Alzheimers.

@Bunpoots, I know what you mean about wondering if you’re next…

Sirena, thank you so very much. It was a harsh illustration whereby if someone with psychosis was threatening my life, they would safeguard me, but if it was someone with dementia, no, I could get on with it. I agree that carers can be so depleted by caring that they have no will or energy to do more. So agree with that. What upsets me, I guess, is the number of social workers who appear to be complicit. I have met loads who have left because of what they are asked to do.
I am so sorry about your mother's friends, too. Thank God for the one who contacts her. I see when I am at Keith's home how a short visit from an outside person can make such a world of difference, such a world. Thank you so much for your post, much appreciated. Geraldine aka kindredxxx

 

[looviloo]

The AZ poster should not always portray happiness (both sufferer and carer), a more realistic view of the harsher side should be shown. - they do this for other diseases why is this different?

This struck a cord with me. Five years ago I was diagnosed with cancer (which has been treated) but ever since I've been acutely aware of how cancer is portrayed in the media. There's the 'good/recovery/celebratory/strong' portrayal, and then there's the 'sad/ill/dying/missing' portrayal, usually in the fund raising ads.

But I'm not so aware of this balance with dementia? I usually see people portrayed as early stage, coping well and still able to enjoy life... which is a very long way from my dad's experience, and the people affected by it.

On the subject of P.C. terminology, I particularly dislike the term 'carer'. It feels wrong. I care for dad and have worked hard to support him, but I don't want to be labelled 'carer' because that implies choice.

 

[B72]

I do understand what you say Kindred. If we don’t try to think positively, it makes things harder.

My OH may be at an early, yet to be diagnosed stage, but we had to cope with a lot, and a lot that was a shock with my mother-in-law before she was happy in a care home. And my sister certainly isn’t in a happy place.

And yes, when I was diagnosed with an early lump, I was given loads of written information.

But I was never told all the dreadful things which might never happen. And surely that’s true of dementia. Everyone is different. My sister is quite different from my mother-in-law, and I know of other people who are different again. Is it really good to frighten people?

What is needed, surely, is for as much written information as possible to be available, leaflets at the doctors, pointing one in the right direction. A list of all the Alzheimer Society leaflets and contact details.

Isn’t that what Talking Point is about? But you need to find out about it.

 

[Unhappy15]

Hello Geraldine aka Kindred.
I do understand what you are saying, every time we write about our experiences the full horror of what has happened floods back and is like a knife to the heart.
Most of the time I really don't believe what I have lived through but I do stay positive, I have to to deal with the situation and with Joe in care at least the fear factor is not there anymore.
The thing I really want is for the issue of dementia to be accepted, the pain, grief and stress,not only for the sufferer, and they do suffer, but also the effect it has on the person who cares.
I know the public are being given the 'soft sell' when it comes raisin money for the disease, for example the publicity for the Alzheimers run, she is doing it for her mum who has forgotten her past life but is still portrayed as smiley old lady. Well that does garner a lot more sympathy than showing someone not being able to do mundane tasks or peeing on the floor I suppose, but it is not a true reflection of the condition.
I accept that but we are nevertheless shown pictures of war casualties and the public accepts and responds to them.
Or is there another reason, in the main dementia is seen as a condition that affects the elderly and in our youth obsessed culture the old are pushed to the sidelines, and perhaps the research into the disease is not considered worthwhile or 'sexy' enough.
Take care Geraldine and keep on fighting.
Kathy x

 

[kindred]

I do understand what you say Kindred. If we don’t try to think positively, it makes things harder.

My OH may be at an early, yet to be diagnosed stage, but we had to cope with a lot, and a lot that was a shock with my mother-in-law before she was happy in a care home. And my sister certainly isn’t in a happy place.

And yes, when I was diagnosed with an early lump, I was given loads of written information.

But I was never told all the dreadful things which might never happen. And surely that’s true of dementia. Everyone is different. My sister is quite different from my mother-in-law, and I know of other people who are different again. Is it really good to frighten people?

What is needed, surely, is for as much written information as possible to be available, leaflets at the doctors, pointing one in the right direction. A list of all the Alzheimer Society leaflets and contact details.

Isn’t that what Talking Point is about? But you need to find out about it.

Thank you, we have to keep our minds away from dwelling on the terrible all the time. I have worked professionally with the consequences of doing this, dwelling on the awful and it is very hard to change. There is something in the human condition that ruminates on the awful and thinks less of the good. But it can get out of hand and become the only story we have to tell.
And yes, everyone is different. And to be told the dreadful things that might happen can paralyse with fear. I didn't know any of it, none at all, although believe me, people everywhere tried to foist horror stories on me. I would just hold my hand up to stop them. To listen to Glen Campbell's family account of the singer's afflication and death is to read a gentle and good natured decline, but other accounts are more savage. Keith was only briefly violent but it was dangerous and was during sundowning.
Believe it or not, the first year after Keith was diagnosed was actually stunningly happy. We spent all our spare time in caffs, doing little puzzles or talking, talking talking. It was like we were students again and it was brilliantly happy. He said some wonderful things to me like how have you been so wonderfully kind to me all these years? and similar.
So I try to set that off against what happened later. But if you ever read my thread: Please don't throw me away, you'll know that we are still bonded as before.
It is so good to hear from you. Thank you with all heart. Geraldine aka kindred.

 

[kindred]

Hello Geraldine aka Kindred.
I do understand what you are saying, every time we write about our experiences the full horror of what has happened floods back and is like a knife to the heart.
Most of the time I really don't believe what I have lived through but I do stay positive, I have to to deal with the situation and with Joe in care at least the fear factor is not there anymore.
The thing I really want is for the issue of dementia to be accepted, the pain, grief and stress,not only for the sufferer, and they do suffer, but also the effect it has on the person who cares.
I know the public are being given the 'soft sell' when it comes raisin money for the disease, for example the publicity for the Alzheimers run, she is doing it for her mum who has forgotten her past life but is still portrayed as smiley old lady. Well that does garner a lot more sympathy than showing someone not being able to do mundane tasks or peeing on the floor I suppose, but it is not a true reflection of the condition.
I accept that but we are nevertheless shown pictures of war casualties and the public accepts and responds to them.
Or is there another reason, in the main dementia is seen as a condition that affects the elderly and in our youth obsessed culture the old are pushed to the sidelines, and perhaps the research into the disease is not considered worthwhile or 'sexy' enough.
Take care Geraldine and keep on fighting.
Kathy x

Kathy my dear, absolutely right. It is about the old, and we all know that will never happen to anyone (!!) and I have heard it put forth that caring for demented relatives gives other old people something to do ...
I was so moved when you said about you not believing what you have lived through, oh yes, yes. Same here.
Oh so good to hear from you. Thank you. with love Geraldine aka kindred. xxx

 

[karaokePete]

I am struggling with a dilemma. As you know, I want this terrible situation realistically portrayed and have tried when I wrote to the Times, believe me I was in your face forthright. The other side is the awful effect on our mental health of living in the dark side. Again, as you probably know, I am a psychotherapist although I work with the young who are a different kettle of fish.
In other words, confronting the hell of the existence is what we need to do to get action, but this will have a difficult effect on our own mental health. This is partly why the think positively philosophy is prevalent. I know, I know, it is difficult to think positively about this situation but what I am saying is that it is difficult for us always to live in the hellish reality in our minds ... Help me out here guys, tell me you understand some of this. I feel equipped to put this point of view only because my experience was so dreadful. Kindred.

I understand completely Geraldine. This is one thing that guides my actions. I have written before about how I feel my experience with dementia sometimes feels like I’m being painted into a corner. To avoid being overcome by the darkness in the corner I try to stay positive and just see the problems as practical problems that require a solution to be delivered in an unemotional way.

There are times when I think that I must come across as a happy chappy optimist. I am happy and I am an optimist but I cry all to often because of dementia. However, every time I reach that state I just try to move beyond by thinking how I can help my wife and self in a practical way. That seems, so far, to help both of us.

Even I had a “yea, so what now” moment a few weeks ago when our GP handed me a copy of the latest report from my wife’s consultant and he had noted “Significant carer stress was observed today.”. Nothing was said or offered by either the GP or the Consultant. However, I think my own mind and my wife’s current level of existence is best served by my own approach.

I agree that not enough is done by the health service etc at times but it’s my personal opinion that quietly stating the case and suggesting what may help can bring better results. Forgive me for being what may seem simplistic about a serious issue but I’m still experiencing early stages so my experience is limited. Last year I felt it may be wise for my wife and I to get flu shots. My wife is early on-set and when I asked the GP for the free shots I was told I could have one as carers are on the list but my wife was too young and dementia wasn’t on the list. I didn’t get emotional, I just pointed out the havoc that infections can cause in people experiencing dementia and my wife got her shot - neither of us got the flu.

I think that the media portraying a stable person who will be destabilized without help may bring greater results. That is not to belittle the horrors that many endure. No, it’s an expression of the hope that by making little changes at an early stage less of the horrors may develop. After all, we are all well aware of how many threads start with a member stating that their loved one was stable and was then put into crisis, from which they may not recover, by something like an infection.

 

[PalSal]

I am struggling with a dilemma. As you know, I want this terrible situation realistically portrayed and have tried when I wrote to the Times, believe me I was in your face forthright. The other side is the awful effect on our mental health of living in the dark side. Again, as you probably know, I am a psychotherapist although I work with the young who are a different kettle of fish.
In other words, confronting the hell of the existence is what we need to do to get action, but this will have a difficult effect on our own mental health. This is partly why the think positively philosophy is prevalent. I know, I know, it is difficult to think positively about this situation but what I am saying is that it is difficult for us always to live in the hellish reality in our minds ... Help me out here guys, tell me you understand some of this. I feel equipped to put this point of view only because my experience was so dreadful. Kindred.

@kindred @carolynp

But surely it’s not a question of the funders deciding which terminology to use, or producing posters etc. Charities who support people and their carer’s do that. Many charities have changed their names because they want to avoid pejorative terminology. Action Cerebral Polsy for example.

And the reality of many other awful situations is not shown in the media. I give one example - cancer. A very close friend of mine recently died of cancer. You never see the reality of people in the very terminal stages in the media. It’s a shock. What about the way people often avoid recently bereaved people? Many people don’t know what to say or how to handle it. So they cross the road.

The balance is to portray a reality which could mean the public avoid PWD
and their carers even more than they do. I’m very wary of telling family and friends about my OHs condition, I’m afraid we’ll become more socially isolated.

The State does not fund and support us any many others as they should. It’s usually people who have experienced something who try to raise extra finds and awareness. Many of us contribute what we can to the Alzheimer’s Society.

Yes, we carers are not in a good place. But I wouldn’t want to see graphic images of some of the worst things in the media.

@Bel72 @carolynp @kindred @Duggies-girl @Unhappy15 @Tryagaintoday @padmag @WIFE not carer
I started this share on a very specific subject-and it was about words (images became a secondary discussion )
My point was user and members of the Alzheimers Society site were asked to contact journalists and the media portraying Alzheimers with particular words. I repeat- the information from this website

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

I suggest that we should respect people those with Alzheimer's disease, but the use of many of these words are very acceptable to me in media and by journalist. I do not know why we are being advised to not use these words around our life situations. (Excluding bullet point 3 which is certainly just disrepectful) I would to know why the site would like us to encourage a sanitized of our experiences in the media. How will that benefit our cause?

 

[kindred]

I understand completely Geraldine. This is one thing that guides my actions. I have written before about how I feel my experience with dementia sometimes feels like I’m being painted into a corner. To avoid being overcome by the darkness in the corner I try to stay positive and just see the problems as practical problems that require a solution to be delivered in an unemotional way.

There are times when I think that I must come across as a happy chappy optimist. I am happy and I am an optimist but I cry all to often because of dementia. However, every time I reach that state I just try to move beyond by thinking how I can help my wife and self in a practical way. That seems, so far, to help both of us.

Even I had a “yea, so what now” moment a few weeks ago when our GP handed me a copy of the latest report from my wife’s consultant and he had noted “Significant carer stress was observed today.”. Nothing was said or offered by either the GP or the Consultant. However, I think my own mind and my wife’s current level of existence is best served by my own approach.

I agree that not enough is done by the health service etc at times but it’s my personal opinion that quietly stating the case and suggesting what may help can bring better results. Forgive me for being what may seem simplistic about a serious issue but I’m still experiences early stages so my experience is limited. Last year I felt it may be wise for my wife and I to get flu shots. My wife is early on-set and when I asked the GP for the free shots I was told I could have one as carers are on the list but my wife was too young and dementia wasn’t on the list. I didn’t get emotional, I just pointed out the havoc that infections can cause in people experiencing dementia and my wife got her shot - neither of us got the flu.

I think that the media portraying a stable person who will be destabilized without help may bring greater results. That is not to belittle the horrors that many endure. No, it’s an expression of the hope that by making little changes at an early stage less of the horrors may develop. After all, we are all well aware of how many threads start with a member stating that their loved one was stable and was then put into crisis, from which they may not recover, by something like an infection.

Thank you so much, this is so valuable to me. Greatly appreciated. I used to try to think I was the manager of the situation, so manage ... and that used to help a lot. It is what you say about the practical way.
I am so sorry that they observed carer stress but no help was given. This reflects all the folk who said to me, I watched you go downhill ...
What??? You watch someone go under and don't reach out a hand ... dreadful.
Worse if a professional does it. Pete, when Keith was hospitalised, I happen to see that carer breakdown was written on his notes. Later, when I went to talk to all the other patients in his ward (all with dementia), I saw that was written on every single other person!! It's like it's expected. That may go some way to explaining if not excusing what happened to you.
I do like your method of quietly stating reason (about the flu jab).
This reply is a tonic, thank you so very much. Warmest, Kindred aka Geraldinexxxx

 

[kindred]

@kindred @carolynp


@Bel72 @carolynp @kindred @Duggies-girl @Unhappy15 @Tryagaintoday @padmag @WIFE not carer
I started this share on a very specific subject-and it was about words (images become a secondary discussion )
My point was user and members of the Alzheimers Society site were asked to contact journalists and the media portraying Alzheimers with particular words. I repeat- the information from this website

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

I suggest that we should respect people with everyone, but the use of many of these words are very acceptable to me in media and by journalist. I do not know why we are being advised to not use these words around our life situations. (Excluding bullet point 3 which is certainly just disrepectful) I would to know why the site would like us to encourage a sanitized of our experiences in the media. How will that benefit our cause?

Thank you very much, good to bring us back to this. Not that long ago, one of the Times journalists wrote about dementia and said what was fearful was, and I can so remember this:

The burden, the boredom, the indignity

But again, nothing happened. It never gets to lift off. I do notice that sites about eating disorders do not suffer from any such silly self-consciousness.

warmest and thank you for starting whether you meant to or not one of the most passionate debates on the posting site! Geraldine aka kindred.

 

[Sirena]

But I was never told all the dreadful things which might never happen. And surely that’s true of dementia. Everyone is different. My sister is quite different from my mother-in-law, and I know of other people who are different again. Is it really good to frighten people?

What is needed, surely, is for as much written information as possible to be available, leaflets at the doctors, pointing one in the right direction. A list of all the Alzheimer Society leaflets and contact details.

Isn’t that what Talking Point is about? But you need to find out about it.

It's a difficult balance, but I think at the moment it is publicly swung firmly in the direction of 'living well with'. Dementia is different from cancer isn't it - no one with dementia ever recovers, they decline, it's terminal. And I think that that can get whitewashed. Of course everyone is different as you say, my grandmother had dementia and her illness took a different course to my mothers, and the dozens of residents in my mother's care home all have different behaviours and needs. I am aware what may happen to my mother unless she is lucky enough to die earlier, and I'd rather be informed than get a horrible shock - and that includes knowing what might happen to me if I get dementia. I think people are already frightened by dementia, and often it is ignorance which frightens them - that is certainly the case with my mother's friends who disappeared, they just wanted to shut their eyes to it.

Talking Point is such a great resource - I used to run a set of forums, but for some reason it never entered my mind there would be a dementia talkboard, I only found this site after my mother had gone into a care home. So yes, definitely more info needed.

 

[SerenaS]

Hi everyone,

I’m Serena and I manage Talking Point. I’ve been following this discussion with interest and understand that you have questions about the guide that has been produced. I've made contact with some colleagues and hope to be able to respond with further information soon.

Bear with me please.

Thanks,

Serena

 

[Whisperer]

I have read through this thread with growing interest. Not really sure where to start as so many bells have rung in my head. Any way here goes.
1) I think what gets me with the happy pictures of living well with dementia is where is the balance? Where is the coverage of not living well with dementia? The Carers virtually house bound looking after a loved one, getting out mostly to doctors appointments, etc. The sickening moments when the carer realises some other capacity has finally been lost. What do people think carer burn out means?
2) So right regarding the funding. No problem here so please move along. I sit and watch politicians pontificate on the social care crisis, usually around the time they move onto the need to reduce taxes, seek value for money, or wheel out their pet spending project. Initially it grates, then it jars, then it really annoys. Remember Carers have votes matey.
3) To be fair to the wider public I think until you actually come into direct contact with dementia you genuinely have very little idea of what it entails. An aging population means more people are experiencing dementia, numbers which will only grow. Certainly the case for me in terms of direct contact with the condition. Become a carer and you start a journey where you get a great deal of knowledge and experience. For the general public arguably it is a beyond a question of not caring, more just not knowing. They have families, careers, social lives, financial concerns, children to bring up, etc. The things we mostly all did in part before we became Carers. Those still doing them and caring I really feel for most of all. However that excuse wears very thin when close relatives and friends sometimes do a runner or become helicopters, randomly landing making a lot of noise, criticising, making at best poor suggestions, then taking off again. Suddenly reality is crashing through the door,
4) I find now contacts in a local Carers group, this forum, etc, have become my reliable guiding stars. Life has constricted, loneliness becomes a new companion in my life, I experience negative feelings, etc, then try my hardest to be positive. For me the growing feeling of disconnection with the “outside world” is the hardest thing to deal with. Is that part of living badly with caring, a character flaw, or just the inevitable lot of most Carers? You tell me.
4) When out and about with mum I find the people most helpful are those who have experience of caring at some point in their life. Buying something in a shop and repetition starts. Do you get the look “please do something about this, make it go away, I am being made to feel uncomfortable”, or do you get the compassionate look, saying I know what you are going through? A person with experience of the road beyond “living well with dementia”.

Please keep posting threads like this one and others. Relative newbies like me learn so much. I guess to quote a hackneyed politician “we are all in it together”, only some more than others chum. Or the film “think bridge beautiful bridge and it will be there”.

 

[PalSal]

A link to the source document may be of use to some.
https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/
also
https://www.alzheimers.org.uk/sites/default/files/2018-09/Dementia Friendly Media and Broadcast Guide.pdf

Thank you.

 

[Sad Staffs]

I have read through this thread with growing interest. Not really sure where to start as so many bells have rung in my head. Any way here goes.
1) I think what gets me with the happy pictures of living well with dementia is where is the balance? Where is the coverage of not living well with dementia? The Carers virtually house bound looking after a loved one, getting out mostly to doctors appointments, etc. The sickening moments when the carer realises some other capacity has finally been lost. What do people think carer burn out means?
2) So right regarding the funding. No problem here so please move along. I sit and watch politicians pontificate on the social care crisis, usually around the time they move onto the need to reduce taxes, seek value for money, or wheel out their pet spending project. Initially it grates, then it jars, then it really annoys. Remember Carers have votes matey.
3) To be fair to the wider public I think until you actually come into direct contact with dementia you genuinely have very little idea of what it entails. An aging population means more people are experiencing dementia, numbers which will only grow. Certainly the case for me in terms of direct contact with the condition. Become a carer and you start a journey where you get a great deal of knowledge and experience. For the general public arguably it is a beyond a question of not caring, more just not knowing. They have families, careers, social lives, financial concerns, children to bring up, etc. The things we mostly all did in part before we became Carers. Those still doing them and caring I really feel for most of all. However that excuse wears very thin when close relatives and friends sometimes do a runner or become helicopters, randomly landing making a lot of noise, criticising, making at best poor suggestions, then taking off again. Suddenly reality is crashing through the door,
4) I find now contacts in a local Carers group, this forum, etc, have become my reliable guiding stars. Life has constricted, loneliness becomes a new companion in my life, I experience negative feelings, etc, then try my hardest to be positive. For me the growing feeling of disconnection with the “outside world” is the hardest thing to deal with. Is that part of living badly with caring, a character flaw, or just the inevitable lot of most Carers? You tell me.
4) When out and about with mum I find the people most helpful are those who have experience of caring at some point in their life. Buying something in a shop and repetition starts. Do you get the look “please do something about this, make it go away, I am being made to feel uncomfortable”, or do you get the compassionate look, saying I know what you are going through? A person with experience of the road beyond “living well with dementia”.

Please keep posting threads like this one and others. Relative newbies like me learn so much. I guess to quote a hackneyed politician “we are all in it together”, only some more than others chum. Or the film “think bridge beautiful bridge and it will be there”.

Thank you @Whisperer you have written everything I would have, if I had been as articulate.
Being the partner of someone with dementia is so lonely. Yes we have family, but they get a snap shot of my husband, they don’t see him as he really is, and as soon as they have gone, and they never stay for very long, he is back to being the person I see 24 hours. And let’s be honest, looking after someone with dementia who is also incontinent, is hard work and stressful.
And because there are so few of us who really understand what it is like to live with dementia, we hold no power with politicians and policy makers. They don’t need to fight for our vote. We are not attractive to them. So, we get swept under the carpet.