Introduction

At some point in our lives, many of us have come into contact with a family member, or friend, who has a relative with dementia. This is characterised by any significant decline in cognition that interferes with daily activities. Although there are different types of dementia, some of them are associated with the elderly, such as Alzheimer's disease, Lewy Body Dementia, vascular dementia or Parkinson's disease. Often, we don’t know how to act in these situations because the symptoms cause fear, uncertainty, and chronic stress, along with the pain of seeing our loved ones deteriorate.¹

The World Health Organization (WHO) revealed that between the years 2000 and 2019, non-communicable diseases (NCDs) were seven of the ten main causes of death globally. Alzheimer’s disease and other forms of dementia were part of these top ten, and in 2019, they ranked third position in Europe and the Americas. These primarily affect women, accounting for 65% of all global deaths, making them one of the most impactful conditions during those years.

Lewy Body Dementia is the second most common dementia, only behind Alzheimer’s disease.  It is characterised by the growth of clumps of proteins inside brain cells, and it can present similar symptoms to Parkinson’s disease, hence, it can be difficult to make a differential diagnosis between both diseases. In this article, we will analyse some characteristics of Lewy Body Dementia and focus on the caregiver of the person suffering from this disease. Caregivers often lack support, and are under constant pressure, to care for their loved ones without the necessary guidance, or strength, to manage the situation.^2,3

A review of the disease's symptoms

Lewy body dementia was discovered by Dr. Frederich Heinrich Lewy in 1912, but it wasn’t recognised as a distinct disease until 1995. It is also known as dementia with Lewy bodies or Lewy body disease. The specific cause of the disease is unknown, with being more than 70 years old as the main risk factor associated with it. In addition, having a family history of dementia has been associated with the development of Lewy body dementia in siblings. It is one of the most aggressive forms of dementia in terms of progression.^3,4

As mentioned earlier, its symptoms closely resemble those of Parkinson's disease, with symptoms such as:²

• Muscle stiffness
• Movement difficulties 
• Repeated falls
• Brief episodes of confusion 
• Difficulty focusing 
• Concentration issues
• Urinary urgency
• Urinary incontinence
• Gastrointestinal symptoms, such as salivation, constipation, or faecal incontinence   
• Additionally, there is a significant impact on vision and hearing, often with hallucinations 

The disease generally presents in individuals over 50 years old, with a life expectancy of 5 to 8 years, or even 2 to 20 years, depending on the case. Although there is no cure, treatments can help improve the quality of life, easing symptoms but not eradicating the disease.^2,3

The caregiver's role

In most cases, family members take on the role of informal caregivers. They don't have medical qualifications but gain an understanding of the disease’s symptoms and daily care needs through experience, relying on the guidance of healthcare professionals.⁵

These family members become intimately familiar with their loved one's behaviour and often experience high levels of stress due to the daily demands of caregiving. Imagine the feeling of seeing your mother or father, aunt or uncle, or any loved one fail to recognise who you are, experience moments of confusion, suffer from muscle stiffness and lose mobility day by day. Watching their health decline minute by minute is incredibly painful.^5,6

As such, caregivers play a crucial role in the life of a person with dementia, but they are often the ones who receive the least attention and are most at risk for depression due to stress, muscle strain, and the changes in routine that come with caregiving.⁶

Preparing the caregiver during the disease's progression

It is essential to provide caregivers with the necessary guidance to facilitate the care of their loved ones. By making small changes in their approach and understanding the disease, caregivers can better equip themselves to handle the situation. Here are some suggestions:^5,6

• Install ramps, and railings, or keep the house on a single level to aid the patient's mobility and reduce the risk of falls.
• Place notes in strategic locations to serve as reminders during moments of confusion.
• Facilitate the patient’s identification to ensure safety when they are outside.
• Create a schedule that includes activities such as exercise, family visits, family dinners, or outings to restaurants. The goal is to enjoy daily life while accepting the disease and minimizing its impact on social life.
• Join support groups at hospitals or medical centres to participate in a community that understands the situation.
• Engage in relaxation activities like yoga, meditation, or alternative therapies.
• Maintain open communication about how the affected person, and the caregiver, are feeling, ensuring that both are heard and supported.

How mindfulness can help caregivers

Studies on caregivers who participated in the Mindfulness-Based Stress Reduction (MBSR) program show a significant decrease in depression. Stress levels became easier to carry over time thanks to the techniques and practices, learned in the program. The practice of mindfulness - living the present moment without any judgment and prejudices - provides caregivers with self-help tools.⁷

More studies are needed to analyse the benefits of mindfulness for caregivers. However, it is an option to explore for caregivers and their loved ones, to seek support and attend to their needs. The goal is for caregivers to fulfil their role without causing undue physical, emotional, or mental harm to themselves.^6,7

It’s important to remember that this disease is progressive, and over time, the affected individual’s condition will deteriorate. For this reason, therapeutic activities such as body relaxation, meditation, and keeping the eyes in the present moment can help caregivers maintain their energy and emotional resilience during the advanced stages of the disease.^6,7

We know that these types of illnesses are irreversible, and all care provided is palliative, meaning it helps manage pain and symptoms.  Therefore, caregivers must avoid neglecting their health, to prevent future problems such as depression, chronic stress, anxiety, sleep disorders, and more.^5,6,7

Summary

Today, we live in a time when the population is ageing rapidly, and both hereditary and external factors, increase the likelihood of developing mental illnesses like the different types of dementia. It is worth noting that dementia, and the various types of it, are part of the main causes of death according to the WHO. This condition is irreversible, as its progression leads to cognitive decline.

In this article, we focused on the importance of the caregiver who assists the patient throughout the disease. Often, caregivers do not receive the emotional or mental support necessary to cope with their situation. We provide several recommendations for families to continue their lives despite the illness, and encourage caregivers, to use techniques like meditation, yoga, and especially mindfulness-based stress reduction (MBSR). This is an excellent tool for managing stress, reducing cortisol levels, and preventing depression in caregivers. More studies are needed to analyse data that could guide future cases.