MORE than 750,000 people in Britain suffer from dementia, the vast majority of whom are over 65, and experts believe this figure set to hit one million in ten years.  

Dementia can rob an otherwise healthy person of their independence and enjoyment of life and leaves them isolated at the same time as their relations and friends struggle to cope while almost mourning the loss of the person.

 

Dementia Facts.

While the popular picture of the complaint is of someone being rather forgetful or eccentric, it can actually leave an individual incapable even of standing or swallowing. They have forgotten how.

  • Dementia is perceived to be a long, progressive complaint. For many people this is the case. 

  • But it can happen virtually overnight. One day an older man was chatting to his daughter about Wimbledon, the next day he was raving about wanting to go home and didn’t know his wife of more than 40 years. He looked the same, spoke with the same clear voice and yet he was completely…demented. Was he mucking about? Sadly, he wasn’t.

 

 

A number of different conditions are grouped under the dementia umbrella and charities provide helpful guidance and advice

 

  • Alzheimer’s itself is the most common condition and it generally progresses relatively steadily, although it varies greatly depending on the individual. It can be many years before the individual is truly incapacitated.

  • Vascular Dementia is the second most common form of dementia. It can strike overnight and tends to progress in downward steps. It can have the same impact on mental capacity as Alzheimer’s, though sufferers can appear unaffected. 

 

There are rarer forms of dementia. But, it is important to remember, the biggest driver of dementia is age.  

This does not mean that dementia is a natural part of ageing. The majority of older people do not get dementia - despite the scare stories.  But most people with dementia are older - over 85.

Although a diagnosis of dementia can be distressing and frightening, many people live with

the condition for years and can continue to enjoy life.  

In the early stages

  • Initially, someone living with dementia may be able to go about their everyday lives with occasional forgetful moments - such as making a cup of tea twice or putting sugar in the teapot;

  • This is quite different from being a little forgetful. A proper diagnosis is required. Just because someone 'sees' things that are not there or forgets what they went to fetch, does not mean they have dementia. There are medical reasons why an older person may act out of character such as a Urinary Tract Infection;

  • Dementia sufferers can often remain at home for years if not for good. It is essential, though, that carers receive support and have breaks and access available help;

  • There are many ways to help someone in the early stages of dementia - including labelling cupboards and doors and keeping a noticeboard with information - as long as they think to use it. One OLM reader put her father's address on his walking stick, in case he went missing;

  • Sometimes, though, a sufferer may need help washing and dressing and may not be able to be left alone - in which case it is essential to get support for the main carer - who is often an older person;

  • Doctors will often not prescribe medicine unless someone in an advanced stage of dementia - but it is worth getting tested, not least because you then appear on the radar of social services, who can advise you on what help may be available, but also because you may then be eligible for council tax relief and council-funded care and respite breaks;

  • Just because someone has dementia does not mean they cannot enjoy life. Music, in particular, is implanted in the memory and an individual will often still enjoy past hobbies and the company of children;

  • But someone living with dementia may react adversely to particular situations - travelling long distances, being in a crowd or in a noisy street. These can all be disorientating situations.

Living with Advanced Dementia.

As the condition progresses:

  • A sufferer can be fully aware they are losing their mental capacity.

  • They may no longer be able to tell the time or read and write or think clearly.

  • Their distress and misery about this only adds to the impact of the condition and can lead to severe depression.

  • Those living with the condition, frequently do not recognise their own family.

  • Many sufferers live in a constant state of worry and unhappiness, wanting to get home to make the children's dinner or meet their mother off a train..

  • A sufferer may think they are living in a television programme that they have just seen. And it can take an awful lot of convincing to get them to think otherwise as their distress heightens. 

Playing Along

 Some people argue that you should just play along with those who have dementia. But that may not be the appropriate strategy every time. If a 90-year old wants to see his grandmother and you say she is out, he may wait by the door for her return and not be deflected by attempts to distract him. Yet, if you point out that she died 70 years ago, he may descend into very real grief. You have to find your own strategies for dealing with situations as they arise.

   Sufferers can become enthralled by TV programmes and convinced they are in them. One sufferer saw an item on the news about a lorry crashing into a train. He became convinced that his mother had been driving the lorry.  Family pointed out that she couldn’t drive and he was slightly reassured but  he spent several days worrying about her until they insisted the police would have been in touch us, if there were a problem.  He wasn’t altogether happy but eventually forgot to be worried.

 

 

 

Stress

Caring for a dementia sufferer can be extremely trying and difficult.

  • They may be constantly distressed or fixated on asking a particular question.

  • They may say the same thing 1,000 times.

  • They may have a tendency to wander or to try to 'escape'.

  • They may put something on to cook and forget about it.

  • Often they are trying to go home – where they feel safe – even though they are at home.

 

This can be so difficult for someone, very often another older person, who is trying to care for a dementia sufferer. Amusing eccentricity may be anything but funny when you have heard it for the millionth time that day. And urgent support is needed, for that person – as well as for the dementia sufferer.

Help.

Day centres, sitting services and respite stays in a nursing home can all be used to alleviate the pressure. Support may be provided by daily carers. But many people do not qualify for assistance or, all too often, these measures prove insufficient and their partner or family feel they simply cannot cope anymore and a residential home specialising in dementia care is sought. With better support and care and improved local services, this may never have been the result.

Care

Dementia specialists argue that residential care should not be seen as a failure – that the person concerned can experience a new lease of life in a nursing home, among more people, where there are better facilities and expert understanding of the condition. Also, of course, it can lift a major burden from those who have been trying to support the sufferer. It is a difficult situation and one which each unfortunate family must confront.

 

 

Coping.

 

When someone has dementia, the sufferer may seem to have 'gone'. But they are still there and often you find that they become more intense versions of themselves.

  • Someone who was angry and loud often becomes more so, likewise someone who is quiet and reserved can withdraw into themselves.

  • Any sufferer, though, may become distressed and depressed by their condition.

  • But they can still enjoy their lives and will sometimes get enjoyment out of simple things – a sing-song or a dog – sometimes which they may not have been interested in before.

  • It is possible to engage with someone with dementia and to be a comfort to them.

  • Life is going to be different and that can be upsetting - for others.

  • Ignoring them, considering their lives worthless and refusing to visit is not going to help.

Dementia Drugs.

 

Drugs are available which can really help some people, for a period anyway, and an early visit to the GP is highly advisable if you have concerns about possible dementia.

  • The doctor can refer an individual to a mental health specialist who can prescribe medication, sometimes even in quite mild cases of dementia.

  • These drugs can slow the progression of the condition and offer some respite from the downward spiral.

  • In some cases, this can mean a remarkable change in their condition.

  • But, medical experts say, after seven years the drugs no longer have the desired effect and the condition will worsen again.

Many people with early stage dementia will be reluctant or even refuse to seek treatment.

They will only seek treatment when they have no option. But, even those in later stages,

may be able to pass the mental tests with no problem.

  • They may well know who is the prime minister or be able to write a sentence or spell a word backwards.

  • But ask them what they had for breakfast, where they are or who the person who brought them is, and they may have problems.

  • It is different for everyone and it is essential, if you are to get help for your relative, for you to speak to their doctors at the earliest opportunity and tell them what the situation really is.

  • Even so, some doctors will be reluctant to prescribe medical help for people with early stage dementia.

  • But it is worth persisting because it can make a real difference – for years.

  • You can even feel as though you have got your relative back again.

Dementia Care.

 

As the condition progresses, relatives will inevitably find themselves in the position of advocate and guardian of someone living with dementia. And their input is essential if the sufferer is to receive appropriate care and help.

   Many care homes now claim to specialise in dementia care and this often seems to mean locked doors and windows. Since the condition is progressive, it can be alarming for someone with early stage dementia to be in such a place alongside much more serious cases. And, if you are seeking care for a relative, you want to make sure they will be with others in a similar phase of the illness.

Many people, particularly in early stages of dementia, are able to stay at home, if they receive help with some tasks. 

  • Basic hygiene can become a bit of a problem

  • Carers may be needed come in to help them wash and dress.

  • All the same rules apply in terms of getting care in the home as would for anyone with a physical condition.

  • It is quite likely someone living dementia will be assigned a social worker, once a diagnosis has been given, who can help with organising care – see here.

   A big problem for the family will that the sufferer may require constant supervision, to stop them wandering off or doing themselves harm by, for instance, putting something in the oven and forgetting about it. Obviously, this will have a major impact on the life of the spouse, if there is one – who is quite likely to be older themselves - or other relations who will need to plan ahead and ensure that there is always someone with the sufferer.

Respite for Carers.

 

Care agencies offer ‘sitting’ as part of their package of care but this can be expensive. Local carers’ groups can advise if there is a scheme operated by volunteers in your area. 

  • Many local areas also offer day centres for dementia sufferers, which will give family members a day or more off a week. And, although the sufferer may not like the idea, it is important that the main carer manages to get some sort of break or their health is likely to be adversely affected.

  • It is essential both for the sufferer and their main carer that they have frequent breaks - whether they like it or not!

  • Many care homes offer respite breaks, where a person with dementia can spend a week or two in residence, allowing the carer to take a break or have a holiday.

  • Social services can organise and even fund  breaks as part of an individual’s funded care package. So, if the dementia sufferer is receiving funding for care at home, they may qualify for a respite home.  Social workers will be able to advise.

 

 

 

Residential Care for Dementia Sufferers.

 

It is particularly essential to ensure that someone with dementia is in a safe and comfortable residential home, if it has been decided that this is the preferred option. They may be unable to ask for help or be confused over their surroundings, so relatives need to be assured that they will be properly cared for.

  • Many homes claim to offer tailored dementia care and have specialist staff training and ‘dementia champions’. 

  • It is rare to find one which genuinely offers such care.

  • They may be well looked after physically – and no longer be a strain on the family – but the reality is that they may be housed and constrained, rather than cared for.

  • They may not be given any special treatment, care or help with their condition.

  • And they will often become very depressed and, confused by their surroundings and turn inwards.

  • The last thing a dementia sufferer needs is to be with lots of other dementia sufferers.

  • They will not be able to ‘make friends’ in all likelihood and may find the erratic behaviour of others distressing or alarming.

  • Quite quickly, when cut off from anything familiar and surrounded by other mentally ill residents, a dementia sufferer can become much worse. In a care home, they can cut off from any normality and unable to relate to anything.

  • It is essential to ensure a dementia sufferer has treatment for any sign of deafness - which only exacerbates the condition. 

   Of course, if the home genuinely offers tailored dementia care, the sufferer may find interest in

new activities or people.  But we at OLM have yet to find such a place.

 

Make a Difference.

Families can make a difference by

  • Frequent visits,

  • Regular routines

  • Being with a sufferer ‘in the moment’ rather than talking about the past or the future.

  • It is no good asking questions about what they remember or even what they had for lunch. 

  • Become adept at one-sided conversations - and accustomed to providing distractions.

 

 


 There are steps you can take to make a real difference 

  • You can tell a story about what happened when you were walking the dog or catching a bus or what is happening in the family or with their favourite football team.

 

  • You can sit with them and have tea and biscuits or join in a sing-song or play a simple game such as dominoes.

  • By supporting such activities, it can mean that they can access your friend or relative in their everyday reality;

  • You can go outside for a walk.

  • If they used to like playing cards, they probably still will.

  • You can read from a favourite book or bring in a radio for them.

One of the things about dementia sufferers in residential care is that they are very often trying to go home,

somewhere familiar.  It is hard, very hard, when someone you love has dementia

but focusing on what you have lost is not going to help them.  

No, Dad, Bubba wasn't driving the truck. She can't drive, honestly....Dad, really, she's ok.

DEMENTIA

MORE than 750,000 people in Britain suffer from dementia, the vast majority of whom are over 65, and experts believe this figure set to hit one million in ten years..

© 2017 by OlderLivingMatters   All text and original photos subject to copyright                    sarah.whitebloom.news@gmail.com

OlderLivingMatters is a journalistic website offering information, guidance and advice based on experience of life today for older people. It is designed to be a friendly hand in difficulties and to highlight the problems of older people and their families. As with any friend, it is not perfect and will not have all the answers all of the time. Everyone’s situation is different and this needs to be taken this into account if you take action. Please be aware that you use the information and advice on this website at your own risk and it is not responsible or liable if things go wrong.