Introduction

Dementia is a syndrome defined by a progressive impairment in cognition, function and behaviour, with a considerable burden in terms of health and social care, and economic costs. As Alzheimer’s disease and other dementias advance, the patient’s capacity, competence and possibility of participation in decisionmaking decrease. Many ethical issues arise while assessing and treating patients with cognitive impairment. A series of ethical dilemmas will be explored in this article. Many of the areas of controversy and each requiring skill in communication in order to reach a consensus decision. This article reviews crucial points in decision-making for people with dementia and their families and caregivers.

Ethical principles and the decision-making process

For a medical practice to be considered ‘ethical’, it must include all four of the Beauchamp principles: autonomy, justice, beneficence and non-maleficence. Autonomy means that the patient must be capable of thought, intention and action when taking decisions with regard to health care procedures. Justice means that the treatments and resources must be distributed equally among all groups in society. Beneficence means that the patient’s right to receive treatment in accordance with their best interests should be defended. Non-maleficence means that possible damages should be prevented and avoided.

The decision-making process

Decision-making capacity is conceptualized as involving four decisional abilities. The first ability describes the understanding of relevant information (i.e. different options of treatments, risk and benefits). The second ability describes the appreciation of the information by applying it to one personal situation. The third ability describes the reasoning through the information in a rational manner. The fourth and last ability describes the communication of a clear and consistent choice. For patients with dementia, impaired decisional competence is a limiting factor for patients’ participation. Therefore, the decision-making process is a crucial issue during the progression of the disease, with different considerations and key points in mild, moderate, severe and terminal dementia.

Capacity

The patient’s capacity and will are important to the decision-making process relevant to a procedure or a treatment. In order to determine the patient’s capacity, it can be questioned whether the the patient can express his/her own personal preferences and whether the patient understands the benefits and risks. However, evaluating capacity for decision-making in a patient with dementia is a very subjective and inconsistent process. Patients with dementia are furthermore deprives in their driving capacity. Although a clinician may be able to predict a patient’s impaired driving ability, this is not sufficient to determine real driving competence in patients with mild dementia. Another form of capacity which is described is financial capacity. Financial capacity encompasses a wide range of judgement and conceptual abilities, ranging from basic skills like counting coins to more complex skills such as paying bills and exercising financial judgement. It is stated that clinicians can assess financial capacity in patients with cognitive impairment with a brief, semistructured clinical interview

Timely diagnosis of Alzheimer Disease and other dementias

Early diagnosis of dementia has both advantages and disadvantages. Advantages include encouragement of the initiation of strategies to delay dependence and institutionalization and early treatment to slow progression before impairment. For family members, early diagnosis can ensure appropriate family support during the progression of the disease, reduce stress and caregiver burden and provide answers and solutions for some questions concerning the cognitive and functional decline. Disadvantages include worries about the acceptance of the diagnosis at an early stage of the disease and risk of depression and suicide.
Because of both the advantages and disadvantages of an early diagnosis, some family members and caregivers show reluctance about patients being informed of the diagnosis of dementia. Although families members and clinicians often worry about which reaction the patient will give after the diagnosis has been confirmed, many studies show that disclosure of a dementia diagnosis seldom prompts a catastrophic emotional reaction. All clinicians and family members must respect the patient’s will to know or not to know and conspiracy of silence must be avoided.

Informed consent and advance directives

In a patient with dementia, the consent should be given by the patient themself  while still capable. Thus it is important to determine capacity before accepting a patient’s consent or refusal to a procedure or treatment. Ideally a patient’s preferences for treatments that prolong life should be established before the disease is advanced. Advance directives are designed to maintain autonomy and to determine the patient’s wishes about diagnostic tests and treatments if he or she is incapable of expressing them at a given time.

Treatment of dementia

There are no drug treatments available that can provide a cure for dementia. However, treatments have been invented that can improve cognitive symptoms, or temporarily slow down their progression. There are two main types of medication: acetylcholinesterase inhibitors (AChEI) and Nmethyl-D-aspartate (NMDA). However, when the patient reaches the terminal stage of disease, consideration should be given for stopping the drugs and palliative management should take precedent.

Palliative care and main issues in the end stages

In patients with any type of dementia there are many needs that involve palliative care, such as pain management, location of care and attention to caregiver burden. The general barriers against providing palliative care for patients with dementia have been shown to be economic and lack of information about needs of the patient. The key points in palliative care for dementia are symptom control, assessment of the need for rehabilitation, information about technical aids, co-ordinating care, spiritual and psychosocial support, and helping the families through all stages of the disease.

The main issues in the end stages of dementia are:

1. Behavioural symptoms. These symptoms vary significantly in form and intensity. Non-pharmacological measures (such as modifying the environment, avoiding physical restraints) should be used before medications.
2. Risk of delirium.
3. Eating disorders. Common problems are poor oral intake, difficulty swallowing, weight loss and malnutrition. Basic interventions to be considered include modifying the food texture, more frequent meals with smaller amounts and use of oral supplementation.
4. Pain. This symptom is frequently underestimated and that can be difficult to assess. The main causes of pain in people with dementia are immobility, pressure ulcers, and constipation.
5. Hospitalization and problems of communication. Some researchers state that if the patient seems to be experiencing more pleasure than suffering overall, it may be justified to continue with life-prolonging measures that can always be re-evaluated in case the situation changes.
6. End of life care. There is a need to anticipate what steps to take in the late stage of dementia, including where patients will spend their last days.

Bulletpoints

• Dementia is a syndrome characterized by a progressive impairment in cognition, function and behaviour, with a considerable burden in terms of health and social care, and economic costs. As Alzheimer’s disease and other dementias advance, the patient’s capacity, competence and possibility of participation in decisionmaking decrease.
• For a medical practice to be considered ‘ethical’, it must respect all four of the Beauchamp principles: autonomy, justice, beneficence and non-maleficence. 
• For patients with dementia, impaired decisional competence is a limiting factor for patients’ participation. Therefore, the decision-making process is a crucial issue during the progression of the disease, with different considerations and key points in mild, moderate, severe and terminal dementia.
• Early diagnosis of dementia has both advantages and disadvantages. 
• Treatments have been developed that can improve cognitive symptoms, or temporarily slow down their progression. There are two main types of medication: acetylcholinesterase inhibitors (AChEI) and Nmethyl-D-aspartate (NMDA).
• The key points in palliative care for dementia are symptom control, assessment of the need for rehabilitation, information about technical aids, co-ordinating care, spiritual and psychosocial support, and helping the families through all stages of the disease.

ExamTickets

• Know how to describe which ethical issues arise while assessing and treating patients with cognitive impairment.
• Know how to explain the four decisional abilities which are part of decision-making capacity.
• Know which questions may be asked in order to determine a patient’s capacity.