The diagnosis of dementia can be life changing for both the individual patient and their partners in care. Dementia can be seen as a normal part of aging and can go undiagnosed. Early diagnosis can lead to more positive outcomes for the person, their caregivers and the health care system (Dubois, Padovani, Scheltens, Rossi, & Dell’Agnello, 2016).
Dementia is an incurable and progressive neuro-degenerative disease that leads to a significant amount of loss for all involved. A damaging stigma about dementia is still present in society that can position a person as incapable, dependent, and decrepit. This stigma can be a roadblock to focusing on remaining abilities, strengths, and the right to take risks.
When a diagnosis is made and treatment/care planning begins, people living with dementia can experience stigmatization from others. For example, others may view the person with dementia as being incompetent. Others may no longer speak directly to the person living with dementia or involve them in conversations and decision making. Instead, people living with dementia may be treated as if they are no longer in the room or as if it’s futile to include them as they won’t understand or have any valuable input (Alzheimer's Society of Canada, 2018).
People living with dementia often do not realize they have functional or cognitive declines, or that increasing limitations over time is a part of the disease process. The medical term for this lack of insight is anosognosia and it is a common feature of dementia (Turró-Garriga, Garre-Olmo, Calvó-Perxas, Reñé-Ramírez, Gascon-Bayarri, & Conde-Sala, 2016). Anosognosia is identifiable when the individual with dementia:
Anosognosia is not the same as denial and it is not something the individual living with dementia can stop.
In order to properly diagnose and plan care for people living with dementia (who experience limited or fluctuating insight), we rely on other people in their lives to provide collateral information on functional, behavioural, mood, and cognitive changes.
Health care professionals begin the process of supporting the individual needs and wishes of the patient with dementia by acknowledging that the patient's autonomy is relational (dependent upon a certain level of support from others around them). To truly provide person-centered care and preserve the rights of the person with dementia (as much as possible), health care professionals must provide skillful counseling, validation, education, and stress relief for caregivers. By doing so, the professionals shift practice to a more relationship-centered approach to care.
An individual's autonomy may be thought of as their degree of independence. Relational autonomy considers the social context in which the individual lives and makes choices. This social context is influenced by the people whom the individual living with dementia becomes increasingly dependent upon (Sherwin & Winsby, 2011).
Individuals living with dementia eventually begin to lose the ability to perform familiar functional tasks. Important roles and activities (e.g. cooking, driving, banking) will eventually need to be completed by someone else. As the disease progresses, the individual living with dementia will eventually depend on outside help for basic activities such as dressing and bathing. This complexity introduces other people into the situation, which can impact the autonomy (independence) and decision making of the person living with dementia.
Relational autonomy has a social component - the autonomy of individuals living with dementia is connected to their caregivers' and families' experiences, needs and values. Caregivers and families experience stress associated with helping the individual living with dementia. The ability of caregivers and/or family to cope with this responsibility can influence the quality of life of the individual living with dementia and their ability to express autonomy.
Health care professionals often experience the ethical challenge of balancing the wishes and goals of the individual with those of caregivers and/or family. It can be difficult when the individual living with dementia lacks insight into their needs. Individuals living with dementia are often limited in their ability to acknowledge the efforts of caregivers and family. Therefore, if the individual living with dementia wants an already stressed caregiver to take on more responsibility, it can be difficult for the health care professional to navigate the care process. Care planning becomes a skillful and creative negotiation that addresses the person’s wishes but also reflects the real abilities and coping level of the caregiver and/or family.
When health care professionals are working with older adults in the health care system, it is important that they understand the potential risk individuals living with dementia may pose to themselves. Risk may also come from others in their lives. Risk may present as self-neglect or elder abuse (e.g. caregiver or family member fails to provide adequate care or takes financial advantages of the individual living with dementia). The person living with dementia is at risk when there is a lack of support from others around them. Care planning must include properly assessing and addressing these risks, while aiming to balance the person’s rights to autonomy.
When care planning, health care professionals must also consider the risk the person with dementia may pose to others. Risk to others may occur in a number of situations. Communal living may present risks in situations ranging from smoking to cooking. Risk to others must be taken into account when considering the person with dementia's ability to drive a car or operate a powered wheelchair. It could also include if the person has responsive behaviours that lead to risks towards others and their caregivers.
Sometimes others may react to the diagnosis of dementia by assuming that the person is not able to live in their home any longer due to perceived risks to themselves or others. In these situations, there is a risk for early institutionalization for the person with dementia.
Alzhiemer's Society of Canada (2018). Stigma. Retrieved from http://alzheimer.ca/en/Home/About-dementia/What-is-dementia/Stigma December 7, 2018.
Dubois, B., Padovani, A., Scheltens, P., Rossi, A., & Dell’Agnello, G. (2016). Timely diagnosis for Alzheimer’s disease: a literature review on benefits and challenges. Journal of Alzheimer's disease, 49(3), 617-631.
Sherwin, S., & Winsby, M. (2011). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations, 14(2), 182-190.
Turró-Garriga, O., Garre-Olmo, J., Calvó-Perxas, L., Reñé-Ramírez, R., Gascon-Bayarri, J., & Conde-Sala, J. L. (2016). Course and determinants of anosognosia in Alzheimer’s disease: A 12-month follow-up. Journal of Alzheimer's Disease, 51(2), 357-366.