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 Navigating the dementia journey

If you or a loved one are at the beginning of the dementia journey you might feel daunted about what’s ahead, and worried about how you’ll cope. Knowing what to expect and how things are likely to progress can make life easier for everyone, so here are the key things to consider

Don’t panic

Whilst you could face difficult challenges and decisions in the next few years, the good news is that time is probably on your side. Remember, the average life expectancy for someone with Alzheimer’s is around 8-12 years and some people live much longer. So whatever the future holds, you and your family have time to prepare – and time to enjoy life, too.

In a nutshell

You’re probably well aware that dementia is a progressive illness which means that it gets worse in time. At first, symptoms can be so mild that they’re hardly noticeable to anyone except those closest to you. Gradually you’re likely to need more help with day-to-day living, including a few tweaks to the way you live to make sure your home is dementia-friendly. Eventually you may need to accept more support – from family, friends or outside agencies – if you want to remain independent. At some point you and your loved ones might also have to consider bigger changes to the way you live if you’re to stay safe and happy.

The dementia journey is rarely as simple as this. Whilst a slow gradual decline over many years is, generally speaking, the likely outcome, you are likely to experience plenty of bumps along the way too, which might take you by surprise or leave you wondering if something’s ‘going wrong.’

Don’t worry – it might be helpful to understand how the dementia journey is often described. There are two basic schools of thought that you may come across.

1. The stages theory

You often hear the dementia journey described as a series of three ‘stages’ based on symptoms. These are:
Early stage – when mild and minor changes in memory or behaviour start to happen. Forgetting recent events, repeating yourself, mislaying things regularly are all common signs of this stage but they can be so subtle that many people mistake these changes for normal ageing.
Middle stage – when more obvious changes occur which might put the person with dementia – or others – at risk. For example, they may get lost when they go out, forget how to work a cooker, go walking late at night, or start mixing up night and day.
Late stage – when loss of memory is pronounced and they become increasingly frail. Your loved one may need help with eating, bathing and gradually become very dependent on others.

Whilst the stages theory can be a useful and straightforward guide, it isn’t an exact science so it’s best not to get too bogged down in wondering which ‘stage’ you, or the person you’re caring for, might be at, or worrying when the next ‘stage’ is likely to occur.

Remember, the stages theory is based on symptoms and doesn’t take into account:

Personal circumstances – some symptoms of dementia can become much more pronounced if the person is living on their own. For example, they might only be in the ‘early stages’ but be experiencing serious difficulties in day to day life, which could make it seem as if they’re in the ‘middle ‘stage.

Good days and bad days – this is one of the most common characteristics of  dementia  and one which can cause much surprise. For example, many family carers experience days when they wonder how on earth their loved one will be able to spend another day living on their own…only to find that the next day they are far more alert and yesterday’s ‘crisis’ seems to have passed.

Personality – emotional resilience, strength, determination and intelligence can play a big part in the dementia journey, sometimes even disguising how far the condition has progressed. For example, you may assume your loved one is still in the ‘early stages’ of his journey when in fact the damage is more severe – he’s just doing a very good job of hiding it!

2. The personal journey theory

As our understanding and awareness of dementia increases, another theory about how dementia progresses has begun to emerge, which focuses on ‘the journey’ itself rather than the symptoms that may, or may not occur. This theory emphasises the uniqueness of each journey and advocates a person centred approach identifying key themes, milestones and challenges along the way, rather than a chronological series of symptoms.

There are four basic strands to the ‘personal journey’ theory. These are

– The system journey – this is the health and medical part of the journey, it includes where people live, how they learn to navigate ‘the system’ and milestone events such as being diagnosed, giving up driving, deciding whether to employ a professional carer or move into a care home.
– Relationships and community – this is about the part played by friends and family on the dementia journey, it includes events such as telling other people about the diagnosis, how relationships might change and new friendships may emerge.
– Changing and adapting – this focuses on how a person with dementia might come to terms with their new reality, make adjustments and begin to live ‘in the moment’ rather than dwelling too much on the future.
– Focusing on me – this looks at what the person with dementia (and their loved ones) might do to stay well physically, psychologically and emotionally. It includes how they may cope with stress and anxiety and go about finding new purpose and meaning in life.

Although this theory conveys a very thorough and realistic picture of the dementia journey – and one which most people will find they relate to – it is quite complex to navigate, and since symptoms aren’t the focus (they’re hardly mentioned at all) it can be difficult to work out ‘where’ you or your loved one might be right now – and where you might be headed.

Good to know

Both theories have something of value to offer a person with dementia and their loved ones.

• Having a rough idea of which ‘stage’ you might be at can be reassuring since it suggests that even the most distressing symptoms you might witness or experience are simply a common part of the condition – not to be taken personally.
• The personal journey theory offers a rich, vivid insight into the complexities of life with dementia, suggesting that the journey itself isn’t a downhill slide into oblivion, but a multi-faceted pathway, which can even contain some positive, experiences and valuable lessons along the way.