Here we look at some of the more personal aspects of caring for a person with dementia, from a carer’s point of view.

Dementia describes the range of symptoms that occur when the brain is affected by certain diseases and conditions, including Alzheimer's disease, vascular disease and multiple sclerosis.

About 850,000 people in the UK are diagnosed with dementia, a number which is always increasing. While its commonly associated with old age, about 40,000 of people under 65 also have dementia in the UK.

I’m not mentioning this to simply regurgitate statistics – but more to emphasise how common it is that someone we might take for granted can become vulnerable, confused, and dependent on the adequate care and understanding of others.

The needs of the dementia carer

When a parent or spouse is diagnosed with dementia, the impact can be just as devastating for the individual who may then take on the role of carer. Having to manage and care for a loved one who is increasingly dependent can lead to feelings of confusion and sadness, and even resentment and anger. This can then trigger guilt, followed by restored caring affection and then more grief at coming to terms with the changes and challenges that are faced. An average day can become a rollercoaster of emotions, which can be made worse for the carer in a situation where they themselves might not have adequate support structures or someone to listen and care for them. Its easy for social circles to focus their thoughts and caring on the dementia sufferer, whilst the carer puts on a brave face and silently suffers alone.

Its therefore just as important for the carer to be able to adequately express themselves, and find reassurances where possible, as it is for the person diagnosed with dementia. In essence, both are struggling to make the best of a difficult and challenging situation.

Working with a loss of memory

The most common symptoms of dementia are loss of memory, mood changes, and cognitive impairment which is why communication can become more difficult. Memory is something we all take for granted, and when a loved one becomes unable to remember important events, conversations or things far more significant, it can be extremely difficult for both concerned.

Normally, short term memory becomes more vulnerable, whilst older, longer term memories are slightly more robust. Even more robust are the kinds of memories for things like processes and routines. For this reason, developing and sticking to routines can be a useful way to keep the dementia sufferer “on track”.

Its because of memory issues that wandering is a very real risk, which is exactly what our GPS Trackers for dementia are designed to assist with. The dementia sufferer may suddenly forget where they are, where they were going, or how to get home. Added to this is the passage of time – if the person forgets how long has passed, then they might underestimate (or forget) the concern of the carers back home. Its not uncommon for a carer to spend hours looking for their loved one, only for the person to act confused and defensive about what all the fuss was about!

When instant locations are requested from Trackers for dementia, most of the time its simply for reassurance. Being able to see where the person is can rule out that fear that they’ve wandered too far, or wandered into a random field or road. Obviously, where a location is cause for concern either because of where it is or how long the person has been out, then locating and retrieving them is reassuringly easier and quicker than waiting and worrying, searching for hours or calling the police. Currently the number of dementia sufferers who carry a location device is in the absolute minority, but in time will likely become almost mandatory and commonplace when symptoms of dementia begin to include wandering.

Managing the person’s own fears and concerns

As well as cognitive decline, the dementia sufferer’s ability to express themselves may be hindered by many other things. An unwillingness to accept what is really happening to them, a fear of dependency, not wanting to “be a burden”, and a genuine confusion for what is normal and what is symptomatic. Its not uncommon for a strong defensive attitude to get in the way of caring!

Being able to empathise, listen and truly understand their perspective can then become a challenge – but an important one to face if an optimum caring environment is to be achieved.