Getting the correct diagnosis and treatment
If someone has Lewy body dementia, a correct diagnosis is important to ensure they receive the right treatment and management and close monitoring of their condition.
If you think the person has been misdiagnosed or their condition has changed, ask for further assessment. This may be with a neurologist for motor symptoms (physical symptoms) or a dementia specialist (old-age psychiatrist)
for cognitive or psychological symptoms. Please see Sources of support on p14 for our information on getting a diagnosis of dementia.
A diagnosis of dementia can have a significant emotional impact on the person with the condition and their family members, so make sure you seek support from local services. Peer and social support groups can be very helpful for sharing experiences. Please see Sources of support on p14 for more information on the emotional impact of a dementia diagnosis.
It is important for the person with Lewy body dementia to have regular reviews of their treatment, medication and any changes in symptoms. Try keeping a diary of their symptoms for a week and share this with the professionals overseeing their care, especially if there has been a change in treatment.
Environment and activies
There are a number of things you can do to simplify and improve the quality of life of someone with Lewy body dementia.
These include:
- replacing or removing patterned carpets, rugs and floor tiles. Difficulties with visual perception (how we see things) are common in Lewy body dementia, and plain floors will reduce the risk of tripping and falling
- removing mirrors, which can be confusing, especially for someone experiencing hallucinations
- getting a large, clear clock showing the day, date and time
- using a pin board or whiteboard for notes and visual reminders
- using voice reminders on the person’s phone or smart speaker
Please see Sources of support on p15 for our information on making the home safe and comfortable for a person with dementia.
Keeping physically and mentally active is important, and an occupational therapist and/or physiotherapist will be able to provide specific guidance on beneficial and meaningful activities. You can ask the person’s GP or specialist for a referral.
Cognitive stimulation therapy (CST) can be helpful, particularly for people in the earlier stages of dementia. This involves taking part in activities and exercises designed to improve memory, problem-solving skills and language, and may be available via the local memory service or dementia services.
It is helpful to focus on activities the person enjoys, with adaptations to make them more manageable if required, such as gardening; helping with cooking, cleaning, and folding washing; and exercising – if the person has mobility problems, which are common in Parkinson’s disease dementia, they could do seated exercises.
If the person is in employment, encourage them to speak to their employer about reasonable adjustments to help them continue to work, if they wish to.
If the person drives, they are legally obliged to tell the DVLA (DVA in Northern Ireland) and their insurance company about their dementia diagnosis. The changes in vision and spatial awareness associated with Lewy body dementia may impair their driving ability.
However, a dementia diagnosis does not necessarily mean the person will have to stop driving straight away – they may be asked to take a driving assessment and/ or issued a shorter licence with a reassessment when it expires. See Sources of support on p14-15 for information on staying healthy with a diagnosis of dementia and employment and dementia.
Responding to symptoms Dementia can affect how someone sees and experiences the world due to physical changes in the brain. This may lead to the person having difficulty recognising and managing their emotions due to low mood, apathy or frustration.
Understanding that changes in emotions are part of the person’s dementia can be an important first step in helping you understand and respond to them sensitively.
There are practical steps you can take to help the person feel more at ease and cope with some of the more challenging symptoms.
- Focus on the person’s strengths rather than on the things they have difficulty with
- Break tasks down into small parts, explaining each step as you go
- If the person experiences apathy and sudden changes in alertness, offer to do activities together if possible or seek help from someone else – they may respond to a different person more positively
- Encourage activity in the mornings or when the person is less tired
- Treatments for anxiety and/ or depression may be effective for some people with dementia. Speak to your GP about options, which might include medication and/or talking therapies
- If there are any changes in physical health such as incontinence, difficulty swallowing or constipation, speak to the person’s GP
Hallucinations and delusions Seeing the person that you care for in unexplained distress can be worrying and upsetting. It is important to try to respond to any signs of distress or unexplained behaviour as calmly as possible.
Ask the person what is happening and listen to what they say, or look for signs in their behaviour. Try not to disagree with what they are saying, even if you know it is not true. Sometimes going along with what they are saying, but neither agreeing nor disagreeing, is the best response.
Ask the person how they are feeling and offer comfort and reassurance if possible. Please Sources of support on p14 for information on false beliefs and delusions.
If the hallucinations or delusions are persistent and/or distressing, speak to the GP or specialist about possible treatments. Some treatments for dementia known as ‘cholinesterase inhibitors’ may help reduce hallucinations.
If the person takes Parkinson’s medication, this may need reviewing as it can increase hallucinations. Antipsychotic medication is generally not recommended but small doses of certain drugs may be tried if the person is in distress, with careful monitoring for any side effects such as severe stiffness or rigidity.
Sleep disturbance
Sleep disturbance can be extremely difficult for both the person with Lewy body dementia and their family. The person with dementia may experience vivid nightmares or involuntary, jerky movements as dreams are acted out. The person may be unaware of this, or may wake up suddenly feeling frightened or distressed. This can also impact on the sleep of other people in the family, particularly the person’s spouse or partner.
Good sleep hygiene techniques may ease sleep disturbance.
These include:
- avoiding caffeine, alcohol and heavy meals prior to bedtime
- maintaining a regular routine, including some exercise and/or activity during the day
- reducing the frequency and length of daytime napping, if possible
- ensuring a comfortable sleeping environment, eg dark, quiet and not too hot or too cold
- providing pain relief before bed if the person is in pain or discomfort – your pharmacist can offer advice
- asking your GP for medications for specific conditions that disturb sleep, such as ‘restless leg syndrome’ (an urge to move the legs when resting)
See Sources of support on p15 for our information on sleep and dementia.
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