Lewy body dementia: admissions and care

Lewy body dementias are associated with the presence of abnormal protein collections in brain cells, which cause brain damage. It is not known why this happens and there is currently no cure.

It is associated with dementia with Lewy bodies and Parkinson’s disease dementia.

For more information on the signs, symptoms and features of Lewy body dementias:

Medication: warning

Sensitivity to antipsychotic medications resulting in neuroleptic malignant syndrome is a feature of dementia with Lewy bodies.

Antipsychotic medications should not be prescribed unless unavoidable.

If medication is unavoidable, consult a specialist, preferably a psychogeriatrician.

Research indicates that a positive response to cholinesterase inhibitors occurs across the spectrum.

Managing Lewy body dementias admissions

Someone with Lewy body dementias being admitted to acute care may be presenting for the first time because of an acute episode. A person going into acute care or moving into residential care may have been diagnosed with dementia or Parkinson’s disease.

Because the cognitive impairment in Lewy body dementias is different from that in Alzheimer’s disease, there may be some confusion with the diagnosis of dementia. For example, people with Lewy body dementias can score well on the Mini Mental State Examination in the early stages.

Get familiar with the person’s individual needs

To help support the person being admitted:

• Ask the person about their medical history, care needs and aids. Defer to the carer if the information seems incomplete or inaccurate.
• Talk with the person’s family or their carer about how the condition is affecting each of them.
• Consider that carers may find it hard to talk about the person’s medical condition or episode, particularly in front of their loved one.
• Consider that carers of someone who is coming in for an acute admission will often advocate strongly for active intervention and describe a connected, active and lucid person prior to the onset of the presenting condition.

Consider the person’s health and ability

Someone with Lewy body dementias may need extra time to process any directions or information and formulate their answers.

Not everyone is affected in the same way, but consider that the person:

• may have insight into their condition and know what is happening to them
• may not have memory loss
• may remember their family and friends for a long time, even until the end of their life
• may be slow thinking about and responding to what you say (so slow down and take your time communicating with them).
• may have days where they do not know who you are, where they are or be able to hold a conversation. They may be agitated or aggressive. These are common reasons for admission into acute care and fluctuations can occur even when the patient is lucid.
• may need supportive aids and have individual care needs if they are going into respite care.
• may need continual assessments, including allied health assessments, because their health can deteriorate rapidly.

Be flexible

In acute admissions:

• If the patient is with a family member, encourage the person to stay with them and be actively involved in presenting information, even if the patient appears lucid and cognitively capable.
• If the patient comes in unaccompanied, establish contact with family as soon as possible.

In residential care:

It may be necessary to change routines as you become familiar with fluctuations in a resident’s behaviour and their preferences. For example, the resident may be able to walk independently, find the dining room and interact appropriately with other residents. In another moment on the same day, they may not know who you are, where they are, or be able to hold a conversation. They may become agitated or aggressive, even with family.

Be prepared

In acute admissions:

• Manual handling and falls assessments can vary from day to day.
• A patient assessed as requiring a hoist transfer may get up and walk independently.
• A patient capable of walking around may ‘collapse at the knees’ on standing, due to orthostatic hypotension.
• Neuropsychiatric symptoms and fluctuations are common.
• A compliant, engaged, reasoning patient can change and become disorientated, aggressive or delusional.
• Adverse reactions to neuroleptic medications can be life-threatening.
• Maintain the established medication regime unless the admission is for medication review. 

Directives and information provided quickly in a noisy environment may not be understood.

• Monitor fluid balance.
• Monitor food ordering and consumption.
• Monitor the ability to use the call button.

In residential care, common issues include:

• Spills and dribbles while eating and drinking. Offer a straw, spill-proof cup or other aids if appropriate.
• Impaired swallowing. A speech pathologist’s assessment may be required.
• Falls when moving from sitting to standing. Encourage the person to take their time and use the support of a chair, table or car door.
• Falls when walking. Although it is instinctive to try to stop someone falling, you may hurt yourself if you attempt to catch them. Be prepared to call for assistance.
• Bladder and bowel accidents. The person may not be able to reliably indicate the need to urinate or defecate. Assistance is often needed.
• Negative behaviours toward group activities. Group activities may overwhelm your resident. They may precipitate unwanted behaviours.

Supporting the families of people with Lewy body dementias

Establish a working relationship with the person’s family. Support and encourage their involvement in their loved one’s care. Encourage families to accept referral to appropriate services.