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What can a caregiver expect when caring for someone with dementia?

Caring for someone living with dementia can be a challenging task. The more we know of what we may face, the more prepared we can be with our responses. Here are some of the situations caregivers may find themselves experiencing, and suggestions for navigating the journey. It can be hard, and we’re not all heroes, so do be gentle with yourself.

Changes in behaviour

Everyone is different, but there are certain changes that you may see over time in someone living with dementia. Being forewarned is helpful, because being taken by surprise by something totally out of character is unsettling, especially if that behaviour is challenging.

The blame game

Even in the closest families, there can be people who think somehow their relative has brought dementia upon themselves. Perhaps it’s thought they’ve led the wrong sort of lifestyle, or they’ve not take care of their health. In one family I know there was a belief that having the ‘wrong’ sort of religious faith had played a part. Yet while there’s a huge amount of research going on into the causes of dementia, there’s no certain answer yet. But surely nobody wilfully plots a life that encourages the onset of dementia? It’s tempting to suggest to anyone who thinks otherwise that they should, in the language of social media warriors, ‘educate themselves’.

Stigma in the community

This is a tough one. Organisations like Dementia Friends have done a vast amount to bring better understanding of dementia to organisations like retailers. But there’s still a great deal of confusion about how to recognise dementia and interact with someone living with it. Sometimes it’s simply a lack of understanding. Sometimes it can feel shameful for families and their communities. We need better and broader education around dementia in general, while when we meet ignorance in day-to-day life maybe we can gently explain, or at least guide those who we care for away from difficult situations.

Resistance in hospitals

Not all medical professionals are totally up to speed on dementia. That’s not altogether surprising really, when they’re working in high-pressure environments and focusing on one specialisation. And many will have done most of their medical training before dementia became a known challenge. Less understandable are those working on hospital wards who don’t appear to understand the needs of someone living with dementia. John’s Campaign has been working tirelessly for some years now to persuade hospitals that opening up the wards to caregivers at any time – not just at visiting times – is vital to the daily care that their patients need. Many have signed up. Not quite so many are delivering the promised accessibility.

The cycle of argument

Even if you know the person you’re communicating has got it wrong, or even appears to be lying, they aren’t trying to fool you. They may well, for example, tell their doctor that they feel fine, that they’ve given up smoking (when you know they haven’t), that they always take their medication (when you know they don’t), and that their family hardly ever visit them (which is patently untrue). You can’t be blamed for feeling frustrated and maybe trying to set a person right about the actual facts, but equally, there is no value in blaming them for getting it wrong. It is hard though. I’ve seen someone take against their partner and criticise them for absolutely everything they do to help – and also claim that they aren’t being supportive at all. It’s so unfair, but there is no point in turning the conversation into an argument. Better to steer it off in another direction.

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