Taking care of someone with dementia is a task few of us would envy. Not only is it all-consuming and emotionally draining but too often those who take it on must stand by and watch as their loved ones literally fade to grey.
As confusing and confronting as dementia is for those who suffer it – there are 342,800 people in Australia who have dementia, 60 per cent of whom suffer from Alzheimer’s Disease (Alzheimer’s) – it also requires a major adjustment in the lives and attitudes of those who care for them.
Dementia in its various forms commonly results in memory loss, reductions in social and cognitive skills and other behaviour changes such as increased mood swings and difficulty in communication and these changes all have a major impact on the lifestyle and skills-set of carers.
The most striking early symptom is memory loss (amnesia), usually manifesting as minor forgetfulness that develops with illness progression. At the same time, many patients are able to recall memories of their youth with the utmost clarity.
The people closest to dementia sufferers may be unsure where to go for help but, says Jon Kontopos, CEO of Dementia Caring, there is a wealth of resources available for carers.
“It’s very important that people understand that those with dementia will have changed behaviours along with a changed lifestyle and that as a carer you will have to have a flexible approach to incorporate their needs into the new circumstances that surround you.”
Jon says that planning will become your new friend as a carer because routine is one of the major corner stones of effective care.
“Your loved one may lose track of the ordinary ever day things that we all need to do – showering, eating, doing the laundry, feeding pets or even taking out the garbage,” says Jon.
“The best way to keep a handle on all these things is to set a routine and stick to it. Don’t try to change the environments that are already familiar for your loved one and use checklists as gentle reminders for things the things that keep life ticking over.”
Safety also becomes paramount, he says, because it is possible that even walking from room to rook will become difficult, especially as mobility decreases.
“That safety aspect is vital,” he says.
“Installing handrails in baths, showers and toilets is a good idea as is changing the clocks and calendars from small type to large type so they’re more easily read. It is easy to lose track of time and even the day of the week so the easier clocks are to see, the better able they will be to keep on track.
“One of the biggest problems we see is with people losing weight and nutrition from forgetting their meal times. They often forget to eat and drink so it’s important for carers to monitor their habits. Offer them easy to chew food and drinks regularly throughout the day and set an alarm to remind you that it’s time for their meal.”
Perhaps most effective though for a new or inexperienced carer is the need to develop clear and simple language as a communication tool. Jon says that sometimes, your loved one may find it difficult to speak fluently or understand sentences or even accurately express their emotions.
“The best way to communicate with your loved one is to use short, simple sentences,” he says.
“Try to keep calm while responding to them and use an even moderate tone.
“It’s also important to use positive body language. You have to remember that if you are having trouble understanding them it’s more than likely they will be frustrated because they can’t make you understand what they want.”
The support needed by each person with dementia will be different – as different as the people themselves are as individuals.
“There’s no one size fits all approach with dementia,” says Jon.
“As such, care needs to be tailored around each person’s individual needs. But most importantly, if people think they aren’t managing well, then the best advice is to seek help and there is a lot of help around.”
Jon says one of the best places to turn is Alzheimer’s Australia as well as the National Dementia Helpline. Aged Care Assessment Teams (ACATs) perform assessments for older people with dementia to determine their needs for both home-based support and residential care.
Less than 10 percent of dementia cases respond to treatment. New drugs are currently on the horizon that are raising hopes for the future but for now there is no cure.
As such, carers need to be aware of the different therapy techniques that can benefit some people with dementia.
Which therapy works best for each individual is a matter of trial and error but the main therapies were developed with the idea of making life easier for both the patient and the carer.
They are as follows:
1.Reminiscence therapy is a simple approach that can be incorporated into almost any dementia sufferers daily life. It involves gathering objects and memories from that person’s past and using them during episodes of confusion and disorientation. The objects – photographs, hair brushes, jewellery, nicknames, events, even clothing – can be used to help them navigate when they drift into another time – when their memories overwhelm the present. This method works because it depend on supporting a person when they “time-travel”, not on trying to bring them out of it which is sometimes abrupt and distressing.
2.Validation is extremely important for dementia suffers. Their memories have regressed but often their emotions have not. Validation is used in conjunction with Reminiscence therapy. When a dementia sufferer goes back to another time, many believe it is better to validate their feelings be reliving that moment from their past with them rather than denying it. They may be confusing memories from 50 years ago as reality in the present and it is distressing to be told what they feel is not actually happening. Ask what they are seeing – what are the colours, the weather, the little details and get them to talk about it. This strategy can help relieve stress both on them and you.
For more information, visit Alzheimer’s Australia at www.fightdementia.org.au. Or call the National Dementia Helpline on 1800 100 500.
