Lewy body dementia: five tips for carers

Lewy body dementia is a common form of dementia caused by the degeneration and death of nerve cells in the brain. The disease is characterised by the presence of abnormal spherical structures, called Lewy bodies, which develop inside the nerve cells. As in Alzheimer’s disease, patients present with a range of symptoms including extreme confusion, difficulty concentrating, visual hallucinations, and tremors and stiffness similar to that seen in Parkinson’s disease.

Caring for someone with Lewy body dementia is a demanding and difficult task, with caregivers taking on responsibilities such as provision of emotional support, arrangement of logistics and key decision-making.

Five considerations when caring for a patient with Lewy body dementia:

1. Emphasise the abilities that remain

In the case of dementia, it can be easy to focus on the abilities that have been lost. Instead of dwelling on the patient’s inabilities, identify their strengths and provide opportunities for the patient to use them, even if it’s in a different way than before.

For example, if the patient has always enjoyed art, integrate ways for them to create or look at art. This may be through creating an art station that allows them to scrapbook, draw or paint. If your loved one has always enjoyed gardening, create a veggie, herb or flower garden or make use of a community garden at their nursing home. Schedule routines around planting or spending time in the garden.

By enabling someone to use their abilities, they will feel valued and useful. This can also help caregivers and family members see the person as not just someone who they need to care for, but as a gifted individual who is living with dementia.

2. Encourage physical exercise

There’s no doubt that physical exercise has many benefits for people of all ages and stages of life. However, it is particularly helpful in preventing and slowing down the onset of Lewy body dementia.

The benefits of regular exercise include improvements in everyday functioning and behaviour, and a decrease in overall stress. As a person with Lewy body dementia is at a high risk of falling, exercise can reduce the likelihood of serious injury in the event of a fall.

3. Intentionally schedule activities

If you are the primary caregiver of a person living with dementia, it can be really challenging to arrange special activities.

However, in the early and middle phases of Lewy body dementia, regular activities can give both a caregiver and the person living with dementia something to look forward to, and better overall quality of life. Meaningful activities can include spending time with animals, creating art, putting together a puzzle, gardening, watching movies about a favourite topic, enjoying a sports game, playing an instrument or singing together.

4. Don’t go through it alone

Primary caregivers often feel the strain of looking after someone, experiencing a range of feelings from guilt to frustration to sadness. In the initial stages of caregiving, it’s important to think about ways to involve support for the patient and carer.

In-home care might be the first step. An at-home aide can take on the tasks that may be more challenging like lifting or bathing, or even everyday tasks such running errands or cleaning the house.

Although a patient may not be ready to move to a care facility, it is important to research options. Schedule appointments and tours with nursing homes from the get-go. This will give you peace of mind, as well as provide the patient with a greater sense of choice in their future.

5. Care for the caregiver

This is one of the most overlooked parts of caring for a person with dementia. So often, caregivers can feel like they don’t have any options for respite care, or that they should be the ones providing 24/7 care, which can lead to feelings of guilt and resentment.

Scheduling regular respite care will allow a primary caregiver to continue their role as a carer feeling more energised and empathetic.

Respite care might take the form of additional in-home services or it may be available through a residential care facility. Whatever it looks like, respite care is a helpful option if carers are away or simply need a break.

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