Are People Who Have Dementia Happy?

[dave50]

Are they happy and are they aware they have this disease? If they are unaware and live in their own little world does this mean they have no worries?
Anyone's thoughts on this?

[sunny-dave]

We don't know - we can only guess based on our perception of their contentment (or otherwise ) from the outside.

No-one has ever come back from the later stages of the disease to tell us for sure (apart from Ernest Saunders of course ...)

[sandyRoe]

I would hope that they have no worries bu I doubt that. Anxiety, and irrational fears, must seem very real to them and there's no escape.

[Barmaid]

I think it depends how bad they are. I know someone with a moderate form and he KNOWS he has dementia. He knows his memory is not as good as it used to be - but for the most part he is perfectly happy and takes the view that "it happens at my age". The biggest form of stress for him is knowing that he will slowly decline.

On the other hand, a great aunt has severe Alzheimers. She is blissfully unaware that her parents have died (they did 20 years ago); blissfully unaware that her husband has died (15 years ago) and sees her sister (who is 87) as the young girl she remembers at age 14. She almost always "appears" happy.

[Old_Geezer]

I think it probably depends. On the person, on the situation, it may be worse on the way when you know things are going wrong and still fight against acceptance.

[KARL]

I have little direct experience of this but peripherally know of some cases where the people concerned have been deeply unhappy. The reason is that dementia usually sets in slowly and the sufferer is aware of the deterioration, at least early on. Knowing that their mental capacity (most noticeably memory) is not what it used to be - they know this is the beginning of the end and do not at all like the prospects of serious incapacity in this regard. One of two cases that I know of best is that of my aunt (paternal). She began to notice significant memory losses and brief periods of confusion. She announced that she "needed to fade away" and refused food. She died within a few weeks. The other is my uncle (maternal) whose intelligence was entirely intact to the end but his memory was severely impaired for a few years before death. His reaction was to accept that "there is nothing to do but wait for the end". Some believe that assisted suicide (i.e. supply of fast acting drugs) would become very popular among this group if/when available. But then there are those who laugh the deterioration off, slide slowly into major disability, and are totally lost for months and even years before dying in some institution.

[Cloverjo]

I have read a column by someone who compared it to how we might feel when we wake up in a strange hotel room and momentarily can't think where we are. Only, for dementia sufferers the feeling is constant. Add to that the fact there are people around they don't recognise and it must be pretty terrifying.

[andy-hughes]

My youngest daughter works in a care home with elderly dementia patients.

Some have instances of lucidity, some are completly unaware of where, or indeed who they are, and some have complete personality changes from hour to hour.

I think the rule is that there is no rule - each sufferer is unique in terms of the effects of the condition.

[VHG]

My wife works for a Carers centre and deals with many carers who look after people with dementia. She has had many carers on the phone in tears, or near to a nervous breakdown, trying to look after their husband or wife with dementia.

Sadly life for people with dementia is not easy, nor for the carers.

For example people with dementia don't remember who their husband or wife is, so often think they are a stranger who has come to kidnap them or burgle them or whatever.

So the person with dementia will sometimes try to attack their husband or wife as they feel they are a threat.

One man who has dementia collects historic swords and has them all over the house and one day he tried to attack his wife with one of the swords. She had to lock herself in a room and call for help. Now if anybody from social services, or the carers centre where my wife works, has to get police support when they visit the house.

Another man with dementia, who was being taking out for a drive by his wife and was sitting in the back of the car, tried to strangle his wife with the seat belt as he thought she was kidnapping him. Now she can no longer take him out in the car as it is too dangerous.

Often people with dementia will forget modern day memoires and only have memories from when they were young. For this reason they think they are living in the wrong place and try to go to their proper home (where they may have lived years ago).

One man with a wife who had dementia found she kept going out the front door without telling him and disappearing. Hours later he would get a phone call from the police from a town 50 miles away where his wife used to lived and she had managed to find her way there.

People with dementia will often "see" people who are not there and have conversations with them. One man who had dementia was convinced his brother was sitting outside the house in a car when the car was empty. His wife took him out to this empty car, but the husband with dementia carried on having a conversation with his brother who was not there.

So living with a person who has dementia can be a very dangerous thing, as well as being terrible upsetting and confusing.

I am not saying ALL people with dementia can be dangerous, but my wife has had a number of cases where living with a dementia person can have potential danger.

It is a horrible illness.

[woofgang]

I have met both people who have been happy in their dementia, living in their own world and only get distressed if people try to force them to behave as "adults"; also people who are very distressed by it, perpetually wanting a husband who has died or to return to a home that no longer exists.
Certainly the transition time when the person is aware that they are becoming more damaged can be distressing for all, although some people slip through this without apparently realising.
The saddest cases, and not often talked about, ate those folk who descend into unpredictable unmanageable violence. For everyone's safety, the only solution is specialist care and heavy medication.
As andy says, the rule is that there is no rule.

[murraymints]

Fil in early stages was quite upset as he had moments of lucidity when he knew what was wrong, but as it advanced he was quite content living in his world, I never corrected him and simply played the game. as it were even when he came out with outrageously inaccurate statements...

[murraymints]

Woof my FIL could be very aggressive and violent if treated the wrong way, which is why I was his full time care, there was a deep bond between us before he took bad and would listen and take direction from me but not always others. He would not have survived long in care as he would only eat food I'd prepared and take medication from me only too !

[dave50]

Very interesting answers, thank you. I just hope it never affects myself or any of my family. I sometimes think it must be worse for the carers than the sufferer.

[grasscarp]

My aunt has dimentia and does not look happy. She also doesn't recognize me. I feel very sorry for her and anyone else with this condition.

[pixie373]

I agree it's very individual, but in general it gets "better" the worse it gets (except for relatives). But people are so different, it probably depends on personality as well as the dementia.

[pixie373]

Grasscarp, it's likely she does recognise you, but has lost the language ability to express it. Often, daughters are referred to as sisters, and so on. I have never seen anyone in 15 years, even with the most advanced dementia,completely lose face recognition. It's the first thing you ever learn.

[birdwoman]

It depends on the type of dementia. My mother has frontal lobe dementia and is now in a care home. She is very content - always pleased to see me and rarely asks for anything. This is the complete opposite of how she was before the dementia.

[atalanta]

I imagine the main emotion must be intense frustration - until even that is worn away by brain deterioration

[saxy_jag]

My mother could never accept that there was anything wrong with her. Sometimes on her good days, in the odd moment of lucidity, she seemed to accept that, as we explained it, the wires in her brain sometimes got crossed and it made her do/say daft things. But as it progressed this happened less and less. By the end, I had ceased to be her daughter and had become an old school friend whom she didn't like very much. My OH, who had always been one of her favourite people, was now someone who had come into the house and taken over and (she was convinced) was there to kill her. Her physical disability meant she couldn't get around much under her own steam and firmly maintained that she was being kept prisoner - not in her own home, because she didn't recognise it as such. She wanted to go home to the house she grew up in and became very upset when we tried to explain that it hadn't been in the family for many years.

It was as though the last fifty years of her life - her husband, own home, kids, work, widowhood - had never happened. That everyone insisted they had when she seemed to have no knowledge of them appeared to upset her very much indeed. I don't believe she was happy at all. She only seemed to improve in spirits a little after she moved to a care home. It was somewhere completely 'new' and she seemed to accept that and the fact that she was 'getting older' (she was 81) and the staff there 'wanted' to look after her. Sadly she had a heart attack after just one month there. Probably a blessing in some ways because we just don't know how long that lift in spirits would have lasted.

[woofgang]

saxy, it never helps to try and tell dementia sufferers the truth......

[saxy_jag]

In those lucid moments, Woofgang, she would actually ask why she couldn't remember things or people, and would apologise for any aggression she had displayed. She worried, of course, at these times, about what would become of her and all we could do was reassure her. She had seen it in her father and grandmother so there was a stage at which she knew there was a good chance of her developing it.

As the lucid moments diminished, then of course there was less and less opportunity for reasoned discussion.