Introduction 

Nowadays, with its rise in the population, dementia is a well-known medical term among the public. However, one of the most common types of dementia, Lewy body dementia, is less well known outside of healthcare professionals, patients, and caregivers.¹ Lewy body dementia is a brain disease associated with behavioural, motor, and cognitive symptoms which worsen over time.² Managing this disease is difficult, particularly in the later stages, when the caregiver’s role becomes crucial. Therefore, it is essential for caregivers to be well-educated on how they can provide meaningful support to the patient.³ 

What is lewy body dementia? 

In the UK, around 100,000 people have Lewy body dementia, with the usual age of onset being 50 or older. Depending on symptom progression, patients may have a life expectancy of 2 to 20 years and typically become more dependent on their caregivers in the later stages of the disease.⁴ The cause of Lewy Body dementia is not entirely understood; however, abnormal protein clumps known as Lewy bodies have been found in certain areas of the patient’s brain. These protein clumps destroy neurones and are believed to affect the production of chemical messengers, such as acetylcholine, needed for learning and memory, and dopamine, which is involved in cognition, mood, movement, and sleep.⁵ There are two types of Lewy body dementia: dementia with Lewy bodies and Parkinson's disease dementia. Both types have similar symptoms and are related to the role of neurotransmitters; a loss of these chemicals is associated with the hallmark symptoms of Lewy body dementia, including delayed thinking and understanding, memory loss, hallucinations, confusion, sleep problems, changes in movement, and emotional changes.¹ While Parkinson's disease also involves mood and behavioural symptoms, its primary symptoms are related to physical movement.³ As a caregiver, there are many ways in which you can support those with Lewy body dementia, and they are listed below.

Educating yourself about lewy body dementia

• Gain awareness of Lewy body dementia. If you are concerned about someone, book a GP appointment for them
• Utilise online resources like the Lewy Body Dementia Association and the Alzheimer's Association to understand the causes, symptoms, diagnosis, and treatment of Lewy body dementia¹ 
• Understand the signs of dementia, which can vary among individuals, and how symptoms progress through the different stages of the disease³ 
• Attend psychoeducation and skills training sessions to help you develop a personalised care plan for the individual you are supporting⁶
• Adjust your approach according to the stages of Lewy body dementia: 

Stage 1: 

• Signs: Usually no symptoms
• Action: Patients typically do not need help and can carry out daily tasks independently 

Stage 2: 

• Signs: Short-term, mild memory loss (e.g., forgetting names)
• Action: Occasional help, prompts, and assistance with memory

Stage 3: 

• Signs: Mild memory loss, confusion, and increased risk of falls
• Action: Support at home, assistance with scheduling appointments, help with motor activities, and removal of tripping hazards

Stage 4: 

• Signs: Moderate symptoms, such as difficulty with everyday tasks
• Action: Provide constant supervision; help with mood regulation, food preparation, and meal delivery; manage motor and sleep problems; and help with personal hygiene and household tasks

Stage 5: 

• Signs: Inability to perform daily tasks
• Action: Manage confusion, delusions, and hallucinations; offer reassurance and support; use simple, clear communication that the patient can easily understand; and assist with daily activities

Stage 6: 

• Signs: Severe dementia
• Action: Provide assistance with toileting, communication, and ensuring that they are eating and drinking enough

Stage 7: 

• Signs: Final stage, with intense symptoms
• Action: Palliative care⁷

Managing cognitive and behavioural symptoms

• Calm down individuals experiencing distressing hallucinations or delusions by offering reassurance or distraction
• Create a stress-free environment and establish a set schedule to help prevent hallucinations and delusions
• Pay attention to changes in their attention and concentration, ensuring they have support with remembering important information and making judgements
• Maintain simple communication⁸
• Address potential sleep problems by creating good sleep hygiene practices (e.g., reducing evening caffeine and alcohol consumption, limiting daytime naps, using clocks that show day and night to help set a bedtime, and consulting trained healthcare professionals for advice)¹
• Ensure the patient's eyes and ears are regularly checked, as vision and hearing issues can exacerbate sleep disturbances and hallucinations⁸

Addressing movement and physical symptoms

• Get a physical needs assessment from the council to identify necessary dementia-friendly alterations in your home (e.g., installing railings to help reduce falls)
• Increase lighting in the home so that trip hazards can be seen easily and prevent confusion. Using contrasting colours can also help a person with dementia recognise their surroundings.¹
• Seek support from physical therapists to promote independent movement, especially if balance, walking, posture, and coordination are affected.⁵
• Use dementia-friendly items, such as labels, signs, large clocks, reminders, and smartphone applications
• Assistance with feeding: Ensure patients eat a well-balanced diet and drink adequate fluids. Help patients recognise food and drink, and provide them with easy-to-use cutlery or finger foods that don’t require utensils
• Assistance with using the toilet: Create easy access and clear signage for the toilet, watch for signs of discomfort that may indicate a need to use the bathroom, establish a routine with regular bathroom breaks, and, if necessary, use waterproof bedding or incontinence pads
• Assistance with washing: Use shallow water for baths to reduce anxiety, set the shower water pressure too low as otherwise, the noise can be overwhelming, ensure attention is paid to avoiding falls, and reassure patients that they will not be left alone if they request support¹

Supporting emotional and mental health

• React sensitively to people with Lewy body dementia, making sure to speak slowly and with patience
• Ensure patients do not become overwhelmed by allowing time for them to reply and limiting the number of activities carried out in one day.¹
• Encourage social activities such as sports groups, art classes, music therapy, memory cafes, and meetings with others who have Lewy body dementia. Also, helps them maintain contact with family and friends.⁹
• Offer support or external talking therapy to help with depression and anxiety, which are common in this disease. Other therapies that may be useful include cognitive behavioural therapy and cognitive stimulation therapy.⁸

Medication management

• Educate yourself on the medications prescribed, including their side effects, functions, and dosages. For Lewy body dementia, commonly used drugs are used to control the symptoms. Examples include carbidopa-levodopa to treat movement symptoms, as seen in Parkinson's disease; clonazepam which may be used to treat sleep problems and disorders; cholinesterase inhibitors for hallucinations; and antipsychotics for behavioural problems.¹⁰
• Be responsible for managing medication by informing healthcare professionals of all the drugs that the patient takes and monitoring for side effects. It is also helpful to be involved in the decision-making process regarding whether dosages should be increased, reduced, or stopped, depending on the patient's symptoms.⁹

Legal and financial planning

• Due to the future progression of Lewy body dementia, caregivers may also undertake a role in legal and financial planning, including present financial planning to help organise medical expenses. 
• Create a lasting power of attorney to legally designate who can handle the patient’s finances and properties on their behalf.¹
• Help a patient with advance statements and decisions about life-sustaining treatment, which may need to be used in the later stages of the disease.⁸

Summary 

Lewy body dementia is a progressive disease that involves behavioural, motor, and cognitive symptoms, which worsen over time. Caring for an individual with this disease can be challenging, as it requires an extensive understanding of the condition and its numerous side effects. The key things that help a caregiver fulfil their role, as emphasised in this article, include education on Lewy body dementia, managing cognitive and behavioural symptoms, addressing movement and physical symptoms, supporting emotional and mental health, managing medication, and helping with legal and financial issues.¹ Overall, acting as a caregiver is a large commitment. To avoid burnout and continue supporting the patient, you must also take care of yourself. Speak to friends, family, and healthcare professionals if you feel you need support with caregiving.⁷