Coping With Dementia Diagnosis: Embracing Life's Changes

Introduction

Dementia is an umbrella term that encompasses a range of symptoms marked by impaired cognition, including memory loss, loss of reasoning, and language difficulties. Although the neurological mechanisms triggering the onset of dementia are yet to be fully understood, Alzheimer’s Disease is known to be the most common cause of dementia, followed by Vascular Dementia, Lewy body Dementia and Fronto-Temporal Dementia.¹ As of 2019, global statistics revealed a staggering 57.4 million documented cases of dementia, while population growth and increased life expectancy indicate that this number will rise to an estimated 152.8 million by 2050.² Therefore, the current absence of an effective cure for dementia makes it one of the most significant health challenges that we face as a society.

Due to its multifactorial nature, the symptoms of dementia can vary largely between individuals and affect emotion, perception, and motor function along with cognition. The behavioural and psychological symptoms of dementia encompass a wide range, including agitation, aberrant motor behaviour, anxiety, elation, irritability, depression, apathy, delusions, hallucinations, and changes in sleep or appetite.³ Given that the available treatments are either disease-modifying or symptom-relieving,⁴ individuals with dementia are likely to experience a gradual loss of independence as the disease progresses. Indeed, a diagnosis of dementia can profoundly affect both the patient and their loved ones. Receiving a dementia diagnosis can be challenging to come to terms with, often leading to feelings of grief or hopelessness. To mitigate severe distress among caregivers and individuals with dementia, it is crucial to develop coping strategies tailored to the specific circumstances of each case.

Coping strategies

Diagnosis: an opportunity to see clearer

It is worth noting that almost half of the dementia cases remain undiagnosed.⁵ The symptoms of dementia are often mistaken for normal signs of ageing, or met with denial due to the difficulty of coping with the diagnosis. This is especially true for early-onset forms of dementia, where the clinical symptoms of the disease can differ from those typically seen in older age. A delay in diagnosis can prolong feelings of uncertainty and misunderstanding. This is particularly important when symptoms include changes in behaviour, as these are often interpreted as voluntary and under the control of the patient.⁶ An accurate diagnosis is an important factor in better understanding these symptoms, which may lead to adjustments in caregiver reactions.⁷ A dementia diagnosis is devastating at any stage, but research indicates that an early diagnosis enables patients to cope better with their condition, fostering a greater acceptance of changes aimed at enhancing their quality of life. Additionally, an early diagnosis provides caregivers with the opportunity to adapt to their roles in a less stressful manner. Diagnostic disclosure confirms the irreversibility of the disease, thus formally marking the need for a caregiver role.⁸

The importance of caregiver interventions for coping with dementia

Dementia caregiving is a physically and psychologically demanding responsibility. Compared to non-dementia caregivers, dementia caregivers experience higher levels of burden and report lower subjective well-being.⁹ Dementia caregivers are also subject to higher levels of anxiety,¹⁰ depression,⁹ and mortality.¹¹ An early diagnosis can potentially do more harm than good, particularly if there are no interventions or support available.¹² The significance of an early dementia diagnosis, especially without treatment, lies in the opportunity to advance interventions for caregivers.

To support dementia caregivers, many interventions have been proposed and evaluated, allowing these to be tailored according to the needs of individuals. These interventions benefit the health and well-being of both the carers and the individuals diagnosed with dementia. The rate of institutionalisation decreased by 33% after 6 to 12 months of caregiver interventions compared to usual care in mild to moderate Alzheimer’s Disease.^13,14 No other approach has achieved a clinically and socially relevant effect of the same magnitude.¹² Some of these interventions are described below:¹⁴

i. Psychoeducational Intervention includes the transfer of relevant skills and knowledge regarding dementia, caregiving, available support, and coping with stress. This can be achieved through active training sessions

ii. Counselling and case management involves evaluating, strategising, facilitating, and advocating for suitable options and services to address the unique needs of carers and care recipients. While educational interventions may follow a standardised approach, counselling and case management are customised to address the specific challenges faced by individual carers or the carer-care recipient pair.

iii. Cognitive Behavioural Therapy (CBT) aims to modify behavioural and cognitive responses to caregiving and directly improve the mental health of caregivers through the application of Cognitive Behavioural Therapy (CBT) principles.

iv. Respite Care: As it is common for caregivers to feel constantly responsible, respite interventions offer temporary relief by providing substitute care. This may include in-home care, daycare services or the temporary admission of the care recipient to a care facility. Respite care can improve feelings of being overwhelmed with responsibilities in caregivers.

v. General support: Befriending programmes, professionally managed support groups, and peer support groups serve as social forums for caregivers to discuss their concerns and anxieties with others in similar situations. This support system aims to alleviate feelings of social isolation and facilitate mutual learning among caregivers.

A key component of successful intervention programmes is the emphasis on individual characteristics and resources. Interventions tend to be more effective when tailored to the specific needs, competencies, or traits of caregivers. This includes factors like gender, age, educational background, and relationship with the patient. Therefore, it is important to reach out to professional counselling groups and/or support groups to understand the interventions best suited for one’s needs.

Maintaining autonomy through advance directives

Autonomy refers to the ability of an individual to have independence and decision-making power. Ways in which an individual can retain some control and influence over future healthcare decisions include establishing a durable power of attorney for healthcare and creating living wills. In response to an increasing emphasis on respecting patient autonomy, advance directives have become more prevalent. Advance directives are statements that enable individuals to outline their preferences for future care and how medical decisions should be handled in the event of incapacity before they reach a point of decisional incapacity. This extends to respect for a person's autonomy into future periods when competence is compromised, a concept known as precedent autonomy.¹⁵ Clinicians play a role in the determination of decisional capacity, while competency is a legal judgement rendered by courts and guided by a medical assessment of decisional capacity. To possess decisional capacity, individuals must demonstrate the ability to understand the available choices, comprehend the risks and benefits associated with each option, appreciate their current state, express their care preferences clearly and consistently, and communicate the rationale behind their choices.¹⁶ This underscores the importance of an early diagnosis, as it enables individuals to exercise their right to self-determination and create advance directives while they are still capable.

Advance directives can be written or oral, and usually fall into two categories: treatment and proxy directives. A treatment directive, also known as a "living will," is a document that outlines the specific types of medical treatment the individual wishes to receive under specific circumstances in case of incapacity. Proxy directives, such as a durable power of attorney for health care, authorise another individual to articulate the author's preferences and make decisions on their behalf. It is also possible for an individual to have both a treatment directive and a proxy directive in place.¹⁷ Advance directives have been demonstrated to be useful in planning for future medical care, particularly hospitalisation decisions and decisions to withhold or withdraw medications, life-sustaining treatment, and medical nutrition and hydration. An opportunity to state one’s preferences can give a sense of dignity and autonomy to the patients and their carers.

Dealing with stigma

"Stigma" refers to an attribute that fosters negative beliefs, lack of knowledge and discrimination, resulting in unequal treatment.¹⁸ Having a chronic illness or disability like dementia can lead to the perception that an individual is different from the general population, potentially exposing them to stigma and discrimination from those without the illness.¹⁹ Stigma around dementia can be seen in the affected population and healthcare systems. The 2019 World Alzheimer Report indicates that around 35% of caregivers have hidden the dementia diagnosis of a family member, while around 62% of healthcare professionals consider dementia a part of normal ageing. The stigma surrounding dementia is a well-documented concern that diminishes the quality of life for individuals living with the condition. Research indicates that stigmatising attitudes are more prevalent among individuals with limited knowledge of dementia, minimal contact with people with dementia, men, younger individuals, and within cultural contexts that influence interpretations of dementia.²⁰

Receiving a diagnosis of dementia presents patients and their families with psychological and social challenges, many of which stem from stigma. Reducing the stigma around dementia demands a comprehensive approach. Person-centred clinical care is vital, addressing harmful beliefs and misunderstandings. This involves personalising experiences, validating concerns, and using dignified language. Challenging stereotypes through direct discussions is also crucial, correcting misinformation and providing support as needed. Educating and raising community awareness by sharing resources and supporting outreach initiatives is equally important. The same is true for advocating for policy action, implementing interventions, lobbying for reforms, and petitioning for healthcare resources and caregiver support. Together, these efforts aim to combat dementia-related stigma and create a supportive environment for affected individuals and their families.²¹

^Summary 

Navigating life with a dementia diagnosis presents profound challenges, not only for individuals facing the condition but also for their families and caregivers. However, it is important to remember that while dementia presents significant hurdles, it does not define the entirety of one's life. By embracing a combination of coping strategies, including seeking support from healthcare professionals, building a strong support network, and focusing on maintaining quality of life, individuals living with dementia can continue to find meaning, joy, and connection despite the challenges they face. Moreover, educating oneself and others about dementia, advocating for policy changes to improve dementia care and support, and challenging the stigma surrounding the condition are crucial steps towards creating a more inclusive and supportive society for those affected by dementia. Ultimately, by facing the diagnosis with courage, resilience, and a supportive community, individuals and their caregivers can navigate the journey of dementia with dignity and hope.