I can live well with Dementia
Bupa is the largest international provider of specialist dementia care. Our 'Person First, dementia second' approach puts the person at the heart of everything we do.
Bupa has partnered with global dementia charity, Alzheimer’s Disease International (ADI), to develop a 10 point Dementia Charter that describes what best practice dementia care looks like.
ADI and Bupa will be seeking international support for the Charter to achieve a better quality of life for people living with dementia in countries all around the world.
For more information view the media release here (pdf,111kb)
What is dementia?
Dementia is a term used to describe the deterioration of brain function that results in loss of memory, reduced language skills, impaired reasoning and loss of daily living skills. Changes to behaviour and emotions are also common.
There are over 100 different types of dementia, with the most common being Alzheimer's disease, vascular dementia and dementia with Lewy bodies.
Who is affected?
In Australia, dementia affects approximately one person in 10 aged over 65 and almost half of people over 80. In 2009, over 245,500 people in Australia were affected by dementia and by 2030 this number is predicted to rise to approximately 591,500 people.
Although there are common symptoms of dementia, each individual can be affected in different ways. Depending on the type of dementia and its progression, symptoms can include:
These symptoms can be caused by other health issues, such as stress, depression, diabetes, vitamin deficiency, infection and other illnesses. Therefore, it's always important for a person to be examined by a doctor and an accurate diagnosis made by a specialist.
There is no cure for dementia. However, medications can be prescribed for people with mild to moderate dementia that may slow down the rate of decline for a number of months.
If you're concerned about a friend, relative or even yourself, then it's advisable to seek help as soon as possible. Your doctor should be the first point of call. They'll want to rule out other diseases or conditions that may produce similar symptoms.
An early diagnosis can:
If a doctor suspects dementia might be present, they'll refer the person to a specialist (a neurologist, geriatrician or psychiatrist) or specialist service for diagnosis.
All types of dementia have similar symptoms and it can sometimes be difficult to tell which type an individual has. A diagnosis is usually made based on a number of tests and procedures. These include assessing a person's cognitive abilities with tests that measure memory, language and concentration.
A thorough physical and neurological examination may be undertaken to rule out other illnesses. Blood and urine tests may be completed to help exclude other causes of confusion and memory loss. Brain scans may also be performed using technology such as Computerised Tomography (CT) or Magnetic Resonance Imaging (MRI) to investigate possible brain changes.
The results of tests and procedures are considered in the context of a person's history of symptoms and other medical conditions. Therefore, input from the person and their family are integral to the diagnosis.
It's important to remember that a person with dementia is still the same person but they now have a disease. Separating the person from the condition will help you to treat them as an individual and with respect.
By remembering that the disease and resulting changes aren't their fault, you may find it easier to be sympathetic and patient, even when you're frustrated, tired or stressed. The person with dementia isn't being 'difficult' or 'lazy' or 'demanding' or even 'just getting old'. They're attempting to cope with challenging and frustrating changes to their abilities and lifestyle.
Communication is vital for all of us. In the early stages of dementia a person may struggle to find the right words or mix up the order of words while speaking. As their dementia progresses they may lose track of what they were saying mid-sentence or forget your name and the names of others close to them. This can be distressing for carers, family and friends.
The memory loss caused by dementia can cause frustration for carers, such as when they must answer the same question again and again. The vital thing to remember is that the person is not trying to be annoying. They have genuinely forgotten that they have asked the question and that you've answered it before.
Although it can be tiring, try to remember that each time you answer the question you are reassuring the person at that moment in time. If you do lose patience and snap at them, they will not understand the reason and may be angry or frightened by your reaction.
Here are some ideas that may help:
Don't be afraid to ask for help or feel that you're failing if you can't cope. Much of the responsibility for care, especially in the early stages, often falls onto one relative or friend who may well be you. This can be extremely stressful and exhausting and others involved may not realise just how many demands are put on you.
Many carers report that they feel as if their health is declining with that of the person with dementia. The stress associated with caring for a person with dementia can lead to emotional and physical health issues. Therefore, it's important to occasionally take a break and try to stay well.
Help from family and friends
It may be helpful to maintain clear and regular communication with family and close friends. This could be achieved through regular phone calls or by holding a get together with family and friends so issues can be discussed and shared. This can assist in sharing the burden and prevent feelings of guilt or resentment towards the people whom you're closest to.
As dementia progresses, the person with dementia may not have insight into their care needs or be resistant to outside help. Therefore, help may be accepted more easily if it's introduced in the earlier stages of dementia.
There are lots of different types of help available from various sources. These can differ from region to region, so a good starting point is to contact your local Alzheimer's Australia branch or Commonwealth Respite and Carelink Centre. Your GP or medical specialist can also help.
Carers often feel that moving a person into an aged care facility is a 'betrayal'. You may feel you've let the person down or should have coped for longer. You may have also previously promised the person that you would always look after them at home and now feel forced to break that promise.
When considering issues like these, it may help to talk them through with someone who understands, and who can help you come to terms with your decision. It is often the case that promises were probably made in a completely different situation, when you had no idea of all the strains and stresses that lay ahead.
Caring for a person with dementia at home may now not be the best thing for them, as their needs have changed. It may help to talk to family, other carers at a support group or with your local Alzheimer's Australia branch. Everyone's situation is different.
A different way of caring
The move to a residential care home doesn't need to mean giving up your caring role completely, unless this is what you want. Aged care facilities simply represent another way of caring. Your involvement is still very important.
Some carers feel that residential care helps them to have a better relationship with the person, as their time together can be more special, less stressful and more 'like it used to be' without the constant worries of practical care.
Getting to know the person
Working with the care staff can help your loved one to feel more at home and get more enjoyment out of their time in the facility. Try to tell the care staff as much as you can about the person so they can understand their needs and are aware of their particular likes, dislikes, habits and circumstances which may trigger behaviours of concern.
When an individual is admitted to the aged care facility, the staff will seek to find out all about them. It's useful if you or another person who knows them well can be there at the admission meeting to provide information if necessary. However, be careful to let the person express their own views and feelings, even if they are not what you were expecting, and try not to contradict the person's statements. If necessary, share your personal understanding with the staff after the meeting or via a letter.
A care plan will be written for the person that will include all the information about their needs, preferences and abilities. This should be reviewed regularly by both staff and family members as the person's needs change over time.
>Working with the care team
Although you probably know the person with dementia extremely well, the care staff will be experienced in caring for people with dementia and may have ideas or suggestions that are new to you. It may be useful to discuss these with the staff and be willing to let them try new things.
The information provided is not intended to replace a consultation with an appropriately qualified health professional. If you are concerned about a friend, relative, or even yourself, then seeking help as soon as possible is advisable. A GP should be the first point of call.
To access an aged care facility, a person with dementia must first be assessed by an ACAT. The team will then suggest an appropriate level of care. Residential care facilities are generally broken down into those that provide 'low level care' and those that provide 'high level care'.
Different fees and funding are associated with residential care and it is important to consider these when reviewing facilities.The information provided above is not intended to replace a consultation with an appropriately qualified health professional. If you are concerned about a friend, relative, or even yourself, then seeking help as soon as possible is advisable. A GP should be the first point of call.