Palliative Care for Dementia – Your General Guide

1. Dementia – The ‘Silent Killer’

The medical literature defines dementia as the progressive decline in cognitive abilities associated with mental impairment that alters at least two of the following functions:

  • Thought processing
  • Memory
  • Language
  • Judgement
  • Behavior

Most people consider dementia to be a disease by itself. In fact, the term “dementia” refers to symptoms of weakening brain functions, caused by an underlying disease or traumatic injury to the head. The degree of damage and severity of symptoms in patients with dementia vary significantly, which is the reason behind the relative diagnostic challenges that doctors face when dealing with this issue.

Termed as the ‘silent killer’, dementia typically worsens slowly over the years. The progression is typically irreversible, until the brain stops functioning and dementia patients start to experience pain, behavioural abnormalities, and physical injuries such as fractures. In our earlier articles, we covered the signs and symptoms of dementia, causes of dementia, home care guide for dementia patientsnutrition for dementia patients and family activities that could help to stimulate brain function of a dementia loved one

In this article, we will discuss how to improve the quality of life for dementia patients and their caregivers through palliative care. This aspect of care is often overlooked, due to the relatively long progression of the disease and the general difficulty in expressing pain and care needs by dementia patients.  

2. Why is palliative care necessary for dementia patients?

2.1. Despite long progression time, dementia is in fact a terminal illness

According to research, a common misconception exists in Singapore that dementia is not a terminal condition. People often live with Alzheimer’s disease and other forms of dementia conditions for many years after first diagnosis, making it difficult to think of these conditions as terminal illnesses. However, the irreversible nature of the condition means that at some point, the brain will fail to function, resulting in fatality.

Due to this misconception, dementia patients often do not receive palliative care early on. Doctors might not recommend palliative treatment until advanced stages. Family members might not feel the necessity for palliative care until pain and other physical symptoms turn severe and persist. At this stage, palliative care plays the role of reducing sufferings rather than improving patient’s quality of life. A better approach to dementia care therefore is to seek palliative care for dementia patients as early as possible, from the time of diagnosis, for the purpose of truly improving the well-being of dementia patients. 

2.2. Dementia’s unpredictable symptoms

One of the negative aspects of dementia is the unpredictable progression of symptoms. The patient could have mild symptoms for years, only to develop incapacitating signs the next year. When such debilitating signs and symptoms develop, the patient will undoubtedly need the help of palliative care professionals who will attend to their fast changing and diverse needs. 

For example, someone with Alzheimer’s disease progressing into final stage may experience below signs and symptoms:

  • The inability to move around without the aid of others
  • Unclear communication or inability to speak
  • Requiring the help of other people to perform daily tasks, such as eating and self-care
  • Having trouble with swallowing and eating food

The symptoms can happen simultaneously or independently. For family members, the dramatic impact of seeing a loved one suddenly unable to swallow food or move around will definitely compromise the quality of care you provide. In such cases, the experience of the palliative care team will be of great help to assess the situation and address these symptoms.

2.3. The need for care among dementia caregivers themselves

According to a study by Alzheimer’s Disease Association of Singapore, more than 27% of caregivers who care for a dementia patient at home feel burdened and stressed often. The study also revealed that “support from family, relatives & friends to aid in your caregiving role” was among the top 3 needs of dementia caregivers in Singapore. In fact, the prolonged care period, often at home to keep your loved one close, can make caregiving for dementia patients highly emotionally and physically stressful, especially among caregivers who have to juggle work, family and caregiving. 

One of the principles of palliative care is to improve the well-being of not just the patients, but also their families. The high demand for support to dementia caregivers makes palliative care by professionals relevant, ideally before caregivers experience burnout or are in dire need for support. Palliative care team can also help caregivers deal with unpredictable care scenarios and plan ahead care options for their loved one. To learn more about palliative care approach and its benefits, check out our in-depth articles on palliative treatment here.

3. Six ways palliative care can help dementia patients and families

By far, dementia symptoms that negatively impact quality of life are chronic in nature. They include pain, mental conditions such as depression and anxiety, and cognitive decline and memory loss. The core principle of palliative treatment is to improve quality of life for the patients. For people with dementia, palliative care promotes better quality of life through managing these chronic symptoms through the advancement of the disease. The patient-centric approach of palliative care also ensures care is tailored to the need and care goal of each patient. 

To manage the diverse care needs of dementia patients, a palliative care team often comprises of multi-disciplinary medical professionals, including doctors and nurses specialising in dementia, palliative doctor, speech therapist, physiotherapist, nutritionist, caregiver, and family members of the dementia patients. The team can also be extended to include social workers to provide psychosocial support if required. 

The below sections will cover the challenges faced by people with dementia and their families, and how palliative care could ease up their suffering, focusing on the following 6 aspects:

  • Managing pain and symptoms of the condition
  • Navigating unpredictable progression of the disease
  • Planning for future care needs (Advance Care Planning)
  • Making difficult end-of-life decisions
  • Boosting palliative nutrition for dementia patients
  • Providing respite care for family caregivers

4. Palliative care helps to manage pain & symptoms for dementia patients by ‘reading the signs’

People with dementia are not able to communicate clearly, which means that their concerns often go unnoticed. For instance, at some point, family members start to ask themselves whether their loved one does not want to eat because he is not hungry or because he is confused or because he does not like the food.

Similarly, when dementia patients experience pain, which might be due to dementia or other comorbidities, they often do not express it clearly. A grandchild and caregiver may wonder if her grandfather is experiencing pain but cannot clearly communicate the issue, or is just in a bad mood. This question is legitimate and difficult to answer by laymen, which is why most patients with dementia find it helpful to rely on the aid of palliative care experts.

In some cases, dementia may present with mild physical symptoms yet severe cognitive deterioration. In other words, the patient may look physically fine, but he/she might be suffering from memory loss, confusion, altered reasoning, and distractibility. For this reason, it can be quite challenging for the patient’s loved ones and the caregivers to take notice of the disconnect between their physical needs and cognitive status. However, palliative care professionals with their experience handling similar cases, are more likely to identify the issue and recommend prompt solutions. 

5. Palliative care aids patients & families in navigating unpredictable progression of dementia

As discussed above, dementia may take a turn at any point during its prolonged progression period. The worsening signs can easily be missed, since dementia patients have difficulty expressing themselves. For example, it could be weeks or months after someone with dementia loses the ability to recognise hunger and thirst for the family to take notice, because they misinterpret the signs with a common lack of appetite. 

However, professionals can quickly recognise the symptoms, and advise the patient’s family and caregiver to start considering artificial feeding. Palliative team will also be able to go through the different feeding options and pros and cons of each; for example infection risk related to PN stomach feeding, and pneumonia or lung infection risk in the case of NG tube feeding. Without timely intervention by professionals, the patient might suffer from malnutrition while family members are stressed out by trying to feed their loved one. 

6. Palliative care team supports planning for future care needs of dementia (Advance Care Planning)

The gradual progression of dementia leads to cognitive deterioration that manifests with:

  • Loss of thinking
  • Memory loss
  • Altered reasoning abilities

At some point, people with dementia will not be able to make decisions for themselves, such as whether they prefer to be cared for at home or in hospital when symptoms become severe, whether they wish to be administered with tube feeding when they are unable to swallow, or how they want their financial matters to be handled. 

To improve the quality of life for those suffering from dementia, such plans should be discussed and agreed with the patients early when they still retain their cognitive function, in an exercise called Advance Care Planning, or ACP in short. The purpose is to ensure people with dementia receive the care they wish to have even when they are not able to make the decisions. Professionals recommend doing ACP as soon as diagnosis is made. Read more about Advance Care Planning in our article here.

While most family members, and to some extent patients themselves, are aware of dementia’s devastating end stage, families often find it hard to bring up the discussion. To some, it could dampen the hope that the end stage is long to come. To others, it could simply be the discomfort of discussing difficult matters. This is where the palliative care team comes in. With ACP training and knowledge of various care scenarios a dementia patient and family may face, the palliative care team can help the patient and family make timely plans for the future. 

7. Palliative care assists families in making difficult end-of-life decisions for a person with dementia

During advanced stages of Alzheimer’s disease and other forms of dementia, unless an ACP is available, almost all dementia patients’ families and their caregivers will face the decision between the patient’s comfort and quality of life on one end and their longevity on the other.

For example, there are several medicines that delay or improve the symptoms of dementia temporarily. However,  the drugs can cause serious side effects that further deteriorate the patient’s quality of life. In such cases, the patient’s family and his/her caregivers will benefit from consulting the palliative care team, to weigh the benefits and risks of prescribing medications and make the best decision they can for their loved one. 

8. Palliative care can help boost nutrition for dementia patients

In a 2016 comprehensive study, researchers analysed the role of nutrition in protecting neurons and improving the quality of life of patients with dementia and other neurodegenerative diseases.

The primary foods that showed promising neuroprotective properties were vitamin E, B vitamins, and omega-3 fatty acids. The worst foods to consume when you have dementia are saturated fatty acids. However, researchers emphasised the role of designing individualised dietary plans for patients with dementia to improve their symptoms and compensate for any potential dietary deficiencies that could worsen their quality of life

As more research is conducted in nutrition and its impact on brain’s needs, we can expect nutrition, dieticians and nutritionists to play a part in the palliative care approach in management of dementia. For general diet tips for dementia patients, check out our earlier article here

9. Palliative care provides necessary respite care for family caregivers of dementia patients

Statistics show that family caregivers who take care of loved ones with dementia experience a high level of psychological and emotional burden. Multiple stories have been shared by dementia caregivers, describing a multitude of intense emotions and stressful situations, ranging from frustration, anger, hopelessness to guilt. They are referred to as the “invisible second patients” for that reason. 

When caregivers fall under the weight of caregiving responsibilities, the care recipients also suffer. Dementia patients may perceive the stress from their caregivers and feel burdened emotionally. The quality of care they receive may be compromised. This is where professionals can help. With a palliative care team providing respite care or regular care, family caregivers will be able to avoid caregiver burnout. Generally, this will improve the well-being of caregivers, and thereby their dementia loved ones. 

10. Takeaway message

Dementia is a devastating condition that requires a multidisciplinary approach to address its symptoms. Due to its slow and long progression, palliative care is not commonly integrated into dementia care in Singapore. We hope this article helped you appreciate the challenges of dementia care that palliative care can address. Working with palliative care experts to manage this condition is fundamental to improve the quality of life of dementia patients and their families. 

To learn more about Ninkatec dementia care service provided in the comfort of your home, check out our Dementia Care Service. With a personalised care approach, we take time to assess the condition of your dementia loved one, your care goals and recommend suitable care plans. Leave us a message or chat with us for a private and personal consultation.

 

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