Dementia Care - Dementia with Lewy Bodies
Dementia with Lewy Bodies is considered a rarer form of dementia than Alzheimers or Vascular dementia, although an increasing number of individuals are being diagnosed with this disease and it may account for more than 20% of people who suffer with dementia.
Lewy bodies are microscopic proteins that occur in the brain cells and were first described by Friedrich Heinrich Lewy as occurring in the brains of people suffering with Parkinson's disease in 1912. Indeed, many of the symptoms of dementia with Lewy bodies can be likened to those of Parkinson's disease (called parkinsonism).
Friedrich Lewy was a prominent neurologist from Berlin. He studied under Dr. Alois Alzheimer, and worked in Alzheimers laboratory alongside Hans Creutzfeldt and Alfons Jakob, all of whom are prominent names in the field of dementia research.
Diagnosis and Symptoms
Diagnosing the many different forms of dementia can be very difficult, and dementia with Lewy bodies is no different. Only a post mortem (autopsy) of the brain can show up the microscopic structures described by Lewy, (shown above), so diagnosis is based entirely on symptoms, behaviour and reaction to medication. It is vitally important to receive the correct diagnosis as people who suffer with this disease can be particularly sensitive to anti psychotic medicines which are often used to treat other forms of dementia. These medications can cause a worsening of parkinsonism with fatal results.
People who suffer with Lewy body dementia have a loss of neurones in the brain and as mentioned earlier, many suffer with parkinsonism, such as rigid limbs, tremor and shuffling gait. Unlike Alzheimers, the memory can remain mainly intact until the later stages of the disease. Early signs include fluctuating abilities in thinking and reasoning, attention span, personality changes and motor (movement) skills. Visual and auditory hallucinations are a prominent part of this disease, and paranoid delusions and depression are common as a result.
Caring For a Person With LBD
People suffering with all types of dementia often have a heightened sense of emotion, their own and their carer's. People with Lewy body dementia are no different, but I believe emotion is the key to being able to care effectively for a person suffering with this progressive disease. As the abilities and understanding of the sufferer can fluctuate so drastically throughout the day (unlike vascular dementia, where the fluctuations are over weeks or months), understanding the individuals frustration and fear are vital to providing effective care. It is quite usual for the individual to be able to perform an activity or communicate effectively one minute, then be quite unable to understand or do the same activity the next! (The fluctuations are usually over hours, if it is drastically changing minute to minute there is a high chance the individual has an infection and a doctor should be called).
Communication can be affected as the disease progresses and this can make it even harder to understand what may have upset the individual or what they want or need at a particular time. As a family member or loved one, it can be particularly difficult to cope with the changing needs of the individual with LBD. I have put some links to sites that can provide support at the bottom of this page.
Often the disease will progress to a stage where professional care is required from trained carers. I would like to stress here that this is not a failing on the part of the family member, and you should only accept carers that understand the disease and will involve you in the care. No-one knows your loved one like you do, and you should be listened to!
From a carers point of view, having cared for people that suffer with this disease, the key to successfully caring for an individual with Lewy body dementia is love. This is not an unprofessional view, and all dementia care training should now be stressing the importance of emotion and relationship building in providing effective care for a person with dementia. It is important to spend time with the individual, get to know them and earn their trust! This can take time with a person who is hallucinating and afraid, but it will allow you to instinctively know what is wrong when they are upset, and to be able to comfort them and make them feel better. The individual needs to trust you to allow you to assist in personal care and mobility, and it is important to allow them to do things for themselves when they are able to, but to understand and not make a fuss when they can't. You have to be able to fluctuate your care with the individuals fluctuating abilities.
Coping With Hallucinations
Often, the hallucinations can be more upsetting for the family than for the individual themselves. One lady I worked with used to see children, she would spend hours chatting and laughing with them and to her, this was not a problem. When she had a bad hallucination however it could be very upsetting for everyone, as she would be very frightened. In this case sometimes it was enough to tell the hallucination to "Go away", other times changing the environment would work e.g. moving the lady to another room or covering mirrors, moving things around and changing the music or film (this lady loved musicals). It was very important not to leave her alone with a bad hallucination. Although some behaviours may seem bizarre to us, if it doesn't cause the individual any distress, difficulty or danger in their lives then it should be left alone, and accepted as part of the persons personality.
Caring An Individual With LBD in Your Own Home
Many families choose to care for their loved ones at home. This means the individual can be with their family and loved ones and not have to go into care. It is important to note however that it is not easy! Support, help and respite should be sought and education is vital so that you understand the disease you are dealing with and the implications for your loved one. It is also important to accept changing aspects of your loved one's personality and abilities, and you may need to make changes to your home to account for these. Support, further information and advice can be sought at the following sites:
The Lewy Body Society
- Lewy Body Society | The more who know, the fewer who suffer
The Lewybody Society (LBS) is a registered UK charity which sponsors research and awareness of Dementia with Lewy Bodies (DLB). LBS also proves information and support to families affected by by Lewy Body Dementia (LBD).