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5 Difficult Questions & Behaviours and How to Respond

Have you been in a situation where your loved one has said something, seemingly completely random, utterly inappropriate, or so far removed from reality you are temporarily stuck as to how to respond?

My father suffered vascular dementia, he was a strong imposing man, the ‘head of the family’ in the old fashion sense. He adored my mum, who was 16 years his junior, with the slightly possessive quality of a man ‘punching above his weight’.

Throughout their marriage, my mum had experienced embarrassing dinner parties where his jealousy would lead to an argument with another guest. As his dementia progressed, this jealousy remained with him, but with an added dose of paranoia and lack of reasonable judgment. He would phone me to tell me she was having an affair with ‘the neighbourhood watch man’, going into long rambling explanations as to why it was true.

My mum struggled greatly saying "he was always like this, that is just him", she was hurt and angry, and their relationship was at a breaking point.

Broadly speaking, there are two main considerations when faced with difficult communication from a dementia sufferer. Firstly, you need to separate your feelings from the situation you are facing. You may be feeling hurt, angry or saddened by the question or comment, but it is important that your emotion is not reflected in your answer. You need to compartmentalise how you feel and park that for another place and time. Easier said than done I know!

Secondly, you need to separate the disease from the person. This is harder when a person’s dementia symptoms or behaviours are an extension of the person they were before. If they were a critical person when healthy, they are likely to be a critical person when unwell, but with the added misfortune of thought disorder or lack of social awareness. However, it is still the disease talking, and as soon as you can separate the person from the dementia, the more peace you will find.

Despite my father’s tendency to have a jealous streak; firstly, he was a very private man, and would never have aired such a personal view to me or anyone else pre-dementia.

Secondly, he was a clever man, the person at the dinner party was likely flirting with my mother, offering an element of rationalisation to the behaviour, however, the neighbourhood watch man handing her a leaflet over the garden fence, would not have bothered him before. The tendency was the same, but the behaviour was very different.

My mum led a much calmer existence once she separated my dad from the disease and was able to look after him until he died peacefully at home.

1. "When I was a child my mum kept chickens"

Your loved one may tell you the same story over and over again…. This can be incredibly frustrating, particularly if the repetition is a criticism or negative comment about you.

I once looked after a lady who told me I was ‘pigeon toed’, at least 30 times a day! It will seem like the first time every time to them, so your reaction is important especially if you want them to feel like you are engaging with them and prevent them from feeling anxious or stupid.

Do not say "You told me", or "Yes I know" (eye roll). If they believe they are repeating themselves this is likely to cause them embarrassment, and it will also confirm to them the extent of their illness which can be a very scary realisation – and to what end? If they don’t believe you, and think you are just being rude, you are inviting a completely unnecessary confrontation which could make you both feel awful.

Do push on through it… nod, yes and no in the right places, confirm you have listened "Wow that must have been amazing!", "How difficult for you"… and repeat when necessary.

This will show that you are actively and respectfully listening, and they will feel valued. This may mean you are hearing and saying the same things but where’s the harm really? Laugh about it with family, and I don’t mean in a way that ridicules your loved one in front of them, but there is a supportive camaraderie to be gained if you can say, "Mum told me the chicken story again today!", or "How long do you reckon until nan tells you the chicken story?".

Do not be afraid to laugh together, a well-placed secret smile will make the repetition so much easier to cope with. Never feel guilty about that, laughter is a great coping mechanism. Analyse the significance of a particular story. There is a great theory called the ‘validation method’ by Naomi Feil, which talks about resolving unfinished business, so a dementia sufferer can find peace before they die.

The repeating of a particular story may be their way of trying to reconcile their feelings about something. Rather than trying to bring the person back to reality, join them in theirs, if they are talking about a deceased spouse or child, make empathic statements such as, "You miss her", or "You loved them", this may help to reduce anxiety and help them feel a greater sense of peace.

2. "I want to go home"

Whether your loved one is in full-time care or you are looking after them in the community, the statement “I want to go home”, especially when they are at home already can be baffling and very frustrating if repeated.

You may also feel hurt if you have made sacrifices personally or financially to ensure the place, they live is safe for them.

It may be helpful to think of the positive feelings the word ‘home’ embodies, such as comfort, warmth, family and protection.

A dementia sufferer may be feeling the opposite of those things - fearful, anxious, unsafe, lonely – but unable to communicate with any lucidity what the problem is and how this can be fixed.

Do not –
Ask where home is or confirm "You are at home", as the term may be a feeling rather than an actual place and this can cause more confusion or upset.

The person may well think they have communicated ‘I feel cold’, so if you start a complicated dialogue about the fact, they are at home already, ‘you know this mum’ ‘remember we sold your house because you needed extra help’ etc this will be like negotiating an emotional minefield.

Don’t put pressure on them to remember…. ‘you remember don’t you?’ can be anxiety-provoking, you are suggesting that it is ‘normal’ for them to remember, so they may feel inadequate or devalued when they don’t. Common responses to inadequacy are ‘I am useless’, or ‘I am such a burden’.

Mentally apply a basic needs checklist, are they dirty in terms of continence, hungry, warm enough, comfortable where they are sat or just incredibly bored, and act to correct any physical need.

Deflect rather than correct – Talk about a memory or anecdote, "I remember when …", talk about family or friends, "Katie passed her reading test …"

When all else fails, lie! If your loved one’s short term memory is so damaged, they are unlikely to remember, and the basis of the lie will bring about less pain and confusion, it is sometimes the kindest way to respond. Blame heavy traffic, or having to wait for someone before you go, use a delay tactic, then try a distraction either in conversation or activity.

3. "I want my mum"
‘I want my mum’, or reference to another long-dead relative in terms of where they are, may completely throw you off-kilter, especially if seemingly random or out of context.

I listened to an activity coordinator trying to reassure an elderly lady after she made this statement. She completely misjudged the situation and went into some long-winded ‘round the houses’ way of getting the lady to realise her mum must be dead "how old are you?", "what year is it now?" She couldn’t answer these questions, and her response was to become angry. Worse, she was then labelled as ‘aggressive’.

Do not give them reminders of who died and when, this can not only cause pain once but over and over again leaving them endlessly stuck at the first stage of grief.

Do think of the positive association the word ‘mum’ may promote and consider that they may be feeling the opposite. ‘Mum’ may mean safety, reassurance or protection so conversely, they may be feeling anxious, vulnerable, or at risk.

Consider your basic needs checklist to rule out any physical cause, and once again, validate "Do you miss your mum?", distract with another activity or conversation, or if appropriate lie. "She’ll be up later", "Traffic is really bad today", coming up with another reason for their absence is often much kinder.

My dad used to look in the mirror and pronounce ‘John’! who was his long-deceased brother. He was incredibly pleased to see him in his reflection, so I would always answer ‘Hi, John’.

Sometimes my dad would laugh at me, thinking I was bonkers for talking to his reflection, and other times my dad would laugh with me, sharing the pleasure of seeing John. Either way, we were laughing - If you can’t beat them join them!

4. "Who are you?"
I was temporarily thrown when my mum asked me about ‘Vickie’ (who is me by the way), I was slightly unprepared as this was the first time she had referred to me in the third person.

On reflection, I think she thought I was my 26-year-old daughter, so actually, it was very flattering!

These situations can really hurt, it's like starting the bereavement process even though the person you have lost is sitting in front of you.

You cannot help but feel that your whole relationship value has been diminished somehow, how can you be loved if you have been forgotten?

No matter how hard, you need to separate your feelings and the situation into two distinctly separate parts. You should absolutely re-visit these feelings at some point, with someone who is there to listen to you, but there is no value in exploring them further with the dementia sufferer. The memory loss is due to brain damage, and it’s as sad and simple as that.

Do not prompt by saying ‘do you know who I am?’, or ‘you know who I am, try and remember’ – this can prompt feelings of guilt and embarrassment.

You cannot exercise this lost part of the brain into remembering again, it’s not deliberate, it’s just a sad and brutal reality.

Do approach your loved one as warm and friendly as you always do. If they cannot remember you, they are likely to go along with it anyway, as we all do when faced with someone who we can’t for the life of us remember the name of!

If they are openly confused, and ask who you are, you really have no choice but to introduce yourself. ‘My name is Vickie, how are you today?’.

As the conversation progresses, they may remember who you are or, more likely, they will remember an emotion associated with you, such as love or happiness, and this will certainly give them comfort.

5. "You stole my money"
Thankfully I have not been on the receiving end of accusations or hurtful judgements, but I have witnessed others distress in the face of them.

It is very difficult not to take this personally, especially if the accusation is accompanied by an audience.

Some people suffer a complete loss of reality which makes them fearful and distrustful. However, whilst delusions and paranoia may be part of the disease, there may be some truth behind what they are saying so don’t discount it entirely.

Do not become self-protective or try and argue in defence of yourself. There is little to be gained here, you are unlikely to justify your way out of the accusation, especially if the accusation has no reasonable foundation, it’s just exhausting for you both.

The accusation is likely the result of thought disorder, it may be an event that has happened in the past, or something is genuinely missing and the person is confused as to why.

The accusation is likely temporary, and whilst you will always remember being accused, your loved one is likely to forget, so again, it is important to remove your feelings from the equation, if you want to continue to have a positive relationship. Do check the 'stolen' item is not just misplaced and find it or replace it, validate their distress ‘let me help you look’.

You may have genuinely taken something like jewellery for safekeeping, bring it with you when you visit so they can connect with it regularly. Distraction is useful in breaking some negative thought processes, but it requires a certain amount of energy on your part.

Some days you will handle it better than others and if you are being accused of something, you may not be in a good enough place to pull it off! If you think you may struggle, take something distracting with you, such as a pet or child, both can have an equally positive impact and will take some of the burden away.

Take a break – you are only human, if it all gets too much, it is less damaging to forgo a couple of visits than continue them feeling hurt and angry. Ask someone else to pop in to give you some time away or if you are caring for someone at home, this may be the time to request some respite care.

A general rule of thumb is to always focus on the now, make observations about what you can see and hear, rather than what they may remember. Tell stories about your past together, ‘I remember when …’ ‘I used to love …’ to take away any pressure or reminders of the severity of their memory loss.

Try and identify the cause of any distress and fix what you can, do not take it personally, and most importantly, take a break and look after yourself.

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