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Posted on 12/10/2018

Caring for someone with dementia: a guide

Dementia currently affects more than 570,000 people in England – 1 in 6 people over 80. It mainly impacts older people, although about 12,500 people under 65 display symptoms – this is known as early onset dementia. Both men and women are affected by the condition.

The ageing British population combined with an increase in cardiac health means that the number of people living with dementia in the UK is forecast to increase to over 1 million by 2025 and over 2 million by 2051. At present, dementia costs the UK more than £26 billion each year, two thirds of which is paid for by  those with dementia and their families.

What is dementia?

Dementia is not an illness in itself. Rather, it is an umbrella term for a group of symptoms caused by a range of different brain disorders, including:

  • Alzheimer’s disease
  • Vascular dementia
  • Dementia with Lewy bodies (DLB)
  • Frontotemporal dementia
  • Dementia pugilistica
  • Creutzfeldt-Jakob disease

Although specific symptoms vary, dementia is characterised by a range of impairments in neurological function, including:

  • Short term memory loss
  • Mood changes
  • Communication problems
  • Disorientation
  • Delusions
  • Impaired cognitive functions
  • Depression
  • Weight loss
  • Behavioural disorders, such as jealousy, paranoia or aggression

Some behavioural problems are linked with specific forms of dementia; for instance pathological jealousy is linked to DLB and dementia pugilistica, both of which can be triggered by head trauma.

What causes dementia?

Because dementia refers to a group of neurological disorders, it can have numerous causes.

Many studies indicate that some forms of dementia are genetic; certainly this is the case with Alzheimer’s and frontotemporal dementia. Dementia with Lewy bodies also show signs of expedition by genetic risk factors.

Dementia can also be caused by head trauma such as a direct head injury, as in dementia pugilistica.  Oxygen deprivation to the brain (hypoxia) has also been shown to increase dementia risk, often caused by factors such as a stroke or cardiac arrest that restricts blood flow or even high altitude sickness. The growth of tumours – which compress brain tissue – may also be considered a dementia trigger related to physical trauma.

There are also a range of other, less common diseases that can cause brain damage, resulting in dementia symptoms. These include:

  • Huntington’s disease
  • Parkinson’s disease
  • Diseases that compromise the immune system, such as, leukemia,  meningitis and AIDS
  • Syphilis
  • Liver cirrhosis, also associated with alcohol-related dementia

Knowing the signs of dementia

If you are concerned that a friend or family member is developing dementia, bear in mind that it is beneficial to identify it early on in order to seek out the right care. Signs to look out for include:

  • Memory problems – the most well-known symptom of dementia and characteristic of Alzheimer’s; memory problems are also relatively common in vascular dementia. These symptoms may manifest in telling the same story repeatedly, forgetting or mixing up names, missing appointments or asking the same question over and over
  • Word confusion – those with dementia often struggle to find words and may replace them with other vaguely related words, or attempts at description. For example, ‘car’ might become ‘bike’ or ‘driving thing’, or the individual may give up entirely and resort to pointing and saying ‘that’. The replacement words become less closely related to the right word as the dementia progresses, and may eventually become nonsense words. This is often the first symptom in frontotemporal dementia
  • Personality changes – the personality changes brought on by dementia can vary widely from person to person. A formerly outgoing person may become nervous; a formerly courteous person may speak out insensitively
  • Symptoms of depression  such as unhappiness, social withdrawal and changes in sleep and appetite – are common, as are mood swings
  • Difficulty with everyday tasks – early signs of dementia involve problems with complex tasks such as managing personal finances or preparing a meal.It is also common to stop in the middle of a task or activity and then go and do something else, leaving it unfinished. Losing things or putting them in odd places (such as putting a handbag in the fridge) is another sign
  • Disorientation – someone with symptoms of dementia will often become confused and anxious in unfamiliar environments and may continually ask where they are or where they are going. Navigating highly stimulating environments such as supermarkets can feel enormously stressful. Someone with dementia may also wander off and get lost even in relatively familiar areas or become convinced that friends or relatives are going to leave them

It can sometimes be hard to differentiate dementia from the natural ageing process, especially in the early stages of the disorder.

Alzheimers.org provides a comprehensive guide to the differences between ordinary ageing and the early stages of dementia.

How to talk to someone with dementia or Alzheimer’s

It’s best to talk to someone living with dementia or Alzheimer’s in an environment that does not overstimulate them. Make sure that you are in a relatively quiet place without anything distracting such as a radio or television in the background. Good lighting is also recommended.

People with dementia may find it easier to read body language than understand words, so make sure that you make eye contact and that your facial expression, posture and other body language signals are relaxed but expressive.

Your voice should likewise be clear and calm, but expressive. Try to talk at a slower pace than you ordinarily would and use short, simple words and sentences. Take breaks in between sentences to allow the person to process what you are saying.

Be especially careful when asking questions. You don’t want to come across as interrogative or to confuse and distress the person if they can’t make up their mind. Be considerate and maintain the person’s dignity – don’t resort to baby language.

Use ‘yes or no’ questions as much as possible, avoiding ‘either/or’ choices that may be harder to understand. For example, do not ask ‘Would you like tea or coffee?’ Instead ask, ‘Would you like tea?’ and if they say no, then ask them if they would like coffee.

If an ‘either/or’ question is unavoidable, make it simpler by holding up or pointing to both options as you say their names, so that they need only point at the option of their choice.

When caring for a loved one with dementia it is important to remember that your own needs are just as important as theirs. Make sure that you take breaks and seek respite care if a friend or family member cannot temporarily take over your responsibilities.

Joining a carer’s forum and speaking to others in the same position can provide you with invaluable support. If you are finding the ongoing care of your loved one very distressing, it might also be helpful for you to seek talking therapy.

What are the options regarding dementia care?

Caring for a loved one who is living with dementia is a difficult task. Not only is confronting the reality of their illness very painful, but it can be hard to know how best to help them and to decide what environment best suits their needs.

Home care

If you are caring for a loved one with dementia in your home, there are several steps you can take to make your living space more dementia-friendly.

When redesigning your home to suit someone living with dementia, make sure that you include:

  • Objects that will trigger memories, such as photographs or mementos from earlier years. Their long-term memory may be intact and seeing images of themselves and their family can help to trigger memories
  • Colour-coded objects – someone with dementia may struggle to navigate spaces, which can cause great distress and anxiety. Painting the bedroom and bathroom doors and the toilet seat bright, contrasting colours makes it easier for them to orient themselves. Avoid pastel hues as they are more difficult to see – stick to primary colours
  • Label everything that your loved one with dementia will need to use in clear, block print to prevent confusion
  • Suitable eating utensils, such as cutlery designed for those with dementia, plus plate guards to prevent spillage. You may wish to serve finger food which is easy to eat

Once dementia has progressed to a certain degree, you may find that caring for your loved one yourself at home is impractical or even unsafe.

A dementia care home

If you can no longer meet your loved one’s needs, you might want to consider moving them to a specialist dementia care home. There are multiple benefits of doing this, including:

  • Peace of mind – care home staff are on duty night and day in case of emergencies
  • Medical supervision – it is not uncommon for those with dementia to be taking multiple types of medication and in a care home this is carefully administered and monitored by medical professionals
  • Companionship – your loved one will be around many people of their own age and with similar symptoms, with whom they can socialise
  • Peace of mind – caring for a relative with dementia can be enormously stressful, so moving them to a care home may provide you with much needed respite

Placing a loved one in residential care may also have downsides, including:

  • The unfamiliar surroundings and people may confuse, disorientate and upset your loved one
  • The closest care home might be quite a long distance from your house, making regular visits difficult
  • You may wish to have your loved one living with you where you can ensure that they are being properly cared for
  • Residential care homes can be expensive

For many people, a way to balance their desire to have their loved ones close to them and to provide them with proper care is to employ a live in carer.

There are many advantages to hiring a live in carer to look after someone with dementia, including:

  • You have the opportunity to live with your loved one without being wholly responsible for their care
  • They can stay in a safe, familiar environment with those they love, which has proven positive health outcomes for those with dementia
  • As you will select the carer/s personally, you can specify which skills and experience you’d like them to have
  • Your loved one can benefit from one to one care, which can support positive health outcomes
  • Pets often provide comfort to people with dementia, but most care homes do not allow them. If your loved one has a beloved cat or dog, they can keep their pet at home while receiving expert care

If you are considering hiring a live-in carer, bear in mind that:

  • You will need to accommodate the carer in your home, so you will need to have sufficient space
  • It may take time to find a carer with the qualifications and/or experience that you need
  • Live-in care can be expensive
  • Your loved one will not have the same social benefits they would if staying in a care home surrounded by people their own age and with similar symptoms

Ultimately, every situation is unique and should be treated as such. What suits one person with dementia may be inappropriate for another. If you are weighing up the pros and cons of different care styles for a loved one with dementia, ensure you take their individual needs into consideration.

With Alzheimer’s UK petitioning the government to devote 1% of the annual cost of dementia to research, it is likely that breakthroughs in treatment for your loved one will accelerate in the future.