My life is changing because of dementia

Getting a diagnosis of dementia is a life-changing event.

People respond in a variety of ways, as Ken says:

Different people have different experiences of diagnosis and therefore different ways of coping afterwards.

(Ken)

Feelings of denial, anger, loss, despair and grief are common responses, as they are to diagnoses of any serious illness.

The first time they said, 'You've got Alzheimer's disease', it was a hell of a shock. When they said, 'There's no cure', I defy anyone to say that's not a shock.

(David)

No one has asked me about my feelings... 'Are you feeling frightened?' We need emotional counsellors, there need to be tests for emotional wellbeing alongside blood pressure etc.

(Pete)

One thing that makes a diagnosis of dementia different from other illnesses is that it is often made worse by the amount of stigma and negativity that surrounds it.

I couldn't take it in at first. I thought there must have been a mistake, and, 'Why me?' It took me a while to accept it. I was very bitter. It was like everything I had worked for had been taken away from me.

(Harry)

Some people find getting a diagnosis is a relief, often after a struggle to reach a diagnosis:

Well you know for me it was a big relief – knowing that I could give it a name.

(Peter)

The effect of dementia on the emotions

Dementia can have an impact on how people experience and handle their emotions, and read them in others.

I cry quite a lot now. I never used to. I can't keep it in.

(Margaret)

My mood or sense of happiness or motivation all varies – it's natural for them to vary. Sometimes I wake up and I'm fed up – and I don't want to do anything but sit in the corner and cry (but I don't). Later on I find something I can do physically and I feel better.

(Peter H)

I'm more sensitive. Sometimes you can have a joke with me, then next day it's not funny.

(Ken)

One thing that has got better since my diagnosis is that I pick up on people's feelings much, much better than I did before.

(Sandy)

For more on these ideas, go to Understanding dementia in the section on Communicating well.

The emotional impact of having and living with dementia is often overlooked.

This can mean that perfectly valid emotional responses to difficulties and challenges can be disregarded and put down to 'the dementia'. In doing this, we may ignore underlying issues in favour of attempting to control what might be seen as 'challenging behaviour'.

I think it's important that people realise that it is hard living with dementia – there's a big emotional impact.

(Harry)

The times when I have felt aggressive it was because of the frustration of living with Alzheimer's – it was about how I felt, not a symptom. Let me give you an example. I have limited mobility – bad hip joint and can't walk easily – and that makes me angry and annoyed sometimes. But no one would say that was a symptom of a broken hip would they? They do that with dementia all the time too though don't they, and it can be incredibly frustrating.

(Roy)

Feelings associated with change

Knowing about how dementia affects memory and the ability to do everyday jobs is really important – but it's also really important that people understand the extent to which dementia can affect people’s lives in all sorts of other ways.

For example, as dementia progresses, people usually need more support, and with this can come a feeling of loss of independence.

I realise I'm relying on other people and will need to rely on others more and more.

(Ken)

What I really hate is having to ask for help – it makes me really angry with myself – and I get cross with others probably because I hate having to ask. It’s hard when it feels like someone else is getting in the way of your independence. If I went down the road of asking for help from social services and all the official bodies, I’d lose some of the power to be able to do it myself – I wouldn’t have the motivation – it would be, 'Well I’ll ask someone to do it for me'.

(Roy)

Along with loss of independence, people with dementia may experience changes in their role, and how they feel about themselves.

The realisation that there were things I could no longer do was awful. For example, my family said they were worried about me going up on ladders, and that is something I have always done so it was hard – especially when you have your grandson telling you not to do things. You know, it’s a man’s job – part of your identity.

(Stan)

I can’t do electrics now, my role in life has changed and because of that my identity does change. I’m doing different things now, my life has changed. I’m free to do things I enjoy.

(Ken)

I found giving up driving really hard, especially as a bloke, you know, because getting your licence and then being independent is like a part of growing up, of being a man, and when you lose that it takes away that bit of you.

(Stan)

I used to be the leader of the pack. Now I’m not.

(Jude)

For many people, their relationships will others might be changing.

My husband is really good, he really supports me and we love each other, but it’s not right is it – I mean we are still young. It’s not the same – do you know what I mean… it makes me sad.

(name withheld)

The other day my sister lost her temper with me when I couldn’t remember something – she’s usually so good – and it was really really horrible – I cried and cried after she had gone, it was horrendous. It must be so hard for her to put up with me with a smile all the time.

(Sandy)

My wife? … She does everything.

(Nick)

Not understanding why it’s happened, it’s a real bugger. I feel awful about my wife.

(name withheld)

My relationships are pretty much as they were. My family have been pretty understanding – at least some are. People do react differently, that’s all there is to it.

(David)

I’ve lost some friends through fear. I don’t know about changes with my wife, but I’m at home a lot now.

(Ken)

I feel bad

People with dementia may experience a range of negative emotions. These emotions are connected to having or living with dementia, rather than symptoms of it. Not everyone with dementia will experience all these emotions.

Fear

Living with dementia can be frightening.

I know I will get worse and that still scares me.

(Margaret)

People need to understand that you’re frightened and alone. You start out on the pathway and often you’re on your own. You can’t understand why things are happening. Understanding the details of the problem removes the fear.

(Peter H)

As Peter’s comment above suggests, having access to information about dementia and understanding what is happening can help. However, as well as having information about dementia, it is also important that people have access to support and information around living well with dementia.

Depression and anxiety

Depression is common in people with dementia, and many people respond well to psychological therapies and antidepressants.

Things started to get a bit dark – I’d be thinking, 'Why me?'.

(Harry)

I don’t want to live like this – I’ve got a long time to live.

(Mick)

Lots of emotions are related – depression and feelings of hopelessness, not knowing what’s going to happen in the future.

(Peter H)

We all feel down and worried sometimes, it’s when these things take over your life – that’s when you need help.

(Ann)

Many people with dementia describe the importance of having a plan, and as long as the plan works, things are OK – it’s when the plan is disrupted that things can become difficult.

All these emotions can occur because of things outside my dementia, BUT if things go off the rails a bit, I find it difficult to cope.

(Ken)

I cried this morning when the taxi didn’t arrive – I thought I had got the day wrong, that I was getting worse.

(Margaret)

Embarrassment and humiliation

Anyone who has experienced the predicament of failing to remember someone’s name might have a very small insight into how people with dementia might feel as their condition begins to affect their memory and ability to do things the rest of us take for granted.

One of the greatest fears for many people with dementia is being ‘caught out’ in social interactions, for example by forgetting someone’s name or identity.

You feel like a right twit when you start getting things wrong.

(Ian)

I feel humiliation when I have to do memory tests.

(Ann)

How we respond to people with dementia if they do begin to struggle can make all the difference.

It comes down to how the individual is treated. There are times when you can’t cope and people will get annoyed with you.

(Peter)

Frustration and anger

Many people with dementia get frustrated because they are no longer able to do what they used to be able to do. For some people frustration may turn into anger.

You have to accept what you’ve got, but I do get frustrated.

(David)

You are just annoyed with yourself and annoyed that you are not as you was.

(Stan)

I get angry with myself or my wife – I get angry inside.

(Peter H)

Lack of motivation

Depression and sadness can cause people to lose their sense of motivation. The effects of dementia can also include damage to the parts of the brain that initiate action or allow people to properly sequence actions to get a job done.

Keeping active is most definitely important BUT I’m unable to keep occupied by myself. I need someone to motivate me. There’s nothing physically wrong with me, but I don’t do the things I used to. I get bored very quickly.

(Mick)

I don’t know what is going to motivate me – it’s difficult to start doing new things.

(David)

However, lack of opportunity to engage in meaningful activity is also a significant factor for many people with dementia.

For activity ideas, look in the section Keeping active and occupied.

I feel good

People often assume that living with dementia is all doom and gloom.
It certainly brings its challenges, but it is clear that this isn’t the only way that people with dementia describe their life, as Chreanne Montgomery-Smith explains:

People hear and read so much about dementia in terms of a decay, decline, and the progression of symptoms – and that is by far the overwhelming narrative – but people with dementia show us every day that it is possible to live well with dementia – and to have a progression of hope.

(Chreanne works with people with dementia)

You know I saw [a celebrity with dementia] on telly the other day and he said ‘I wake up wondering what is going to go wrong today’ – I don’t do that anymore, how can you carry on if that’s your attitude? My life is positive now – it wasn’t when I was first diagnosed, but it is now, my life is good.

(Sandy)

I take it as it happens, what else can you do, you just have to get on with it.

(Ian)

A good attitude is one of laughter – if you’re not going to laugh about something, the other option is to cry. Shit happens – get on with it!

(Derek)

It’s like – I used to worry about getting lost in town – I worried a lot. Now I don’t care, I do get lost but so what? Does that mean I’m better or worse?

(Sandy)

If you can stand up and do it – do it. If you can’t stand up then sit down and do it – if you can’t sit down, then lay down and do it – the important thing is that you DO IT.

(Stan)

I still get down times – but when I get home today (after a day out walking) I’ll be on top of the world. Life doesn’t end just because you have got dementia – it’s just another challenge in life, another adventure.

(Brian)

We need some T-shirts that say ‘I might have dementia but I’m still having fun!'

(Forget Me Not group, Swindon)

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