Dignity, Risk, and Choice

Education, resources and practice considerations in older adult care

Diagnosis

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).

Lack of Insight

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:

  • Has limited or no insight into their dementia or care needs.
  • Acts as if there is nothing wrong.

Anosognosia is not the same as denial and it is not something the individual living with dementia can stop.

 

Important Role of the Caregiver

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, behavioral, 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.

 

Consider
  • When someone has anosognosia, how may we interact with them when trying to set up supports to enable them to live in a way consistent with their values, preferences, and routines?
  • Are there some approaches that work better than others when convincing someone with a lack of insight that they need supports?
  • How do we educate partners in care about this complicated aspect of the disease?
  • How do we still aim to support someone living at a certain risk level when we know they have limited insight or limited capacity for decision making?

Relational Autonomy

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.

Case Study
  • Mr. Jones has moderate dementia. He doesn't want to move into long-term care. He’s lived in his home for 30 years. He likes using his small workshop and enjoys the privacy of sitting in his living room every evening. He relies on one daughter for most Instrumental Activities of Daily Living (IADLs), and another daughter to help with a weekly shower. His daughters are his emergency contacts on his personal medical alert system. His daughters find themselves having to help him up from falling a few times a month and are tired. They work fulltime and feel he shouldn’t be living at home. When asked how he’s managing, he says “Oh, I can do everything myself.” or “My daughters help a bit, but I could manage without them.”
    • How might we approach this situation with the goal to preserve his dignity of risk as much as possible and at the same time supporting his caregivers?
    • How do we navigate through differences in risk tolerance?

Risk

To Self & From Others

When health care professionals are working with older adults in the health care system it is important that they understand the potential risk individual's 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.

To Others

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. 

Consider
  • A client with dementia does not recognize their home is unsanitary and their personal hygiene is lacking. They have stopped cleaning up around the house and are having difficulties with self-care.
    •  How do we balance respect for personal dignity and choice with risks to others in this situation?
  • If we discover financial resources are available to provide private care, but family decision-makers are withholding the financial support, how might we navigate the balance between preserving the person’s dignity of risk, the relationship between person and decision maker, and the decision maker’s concerns or views? 
  • How do we approach risks associated with kitchen/meal preparation? Smoking?‚Äč
    • How are caregivers educated about these risks?
    • How may risks be lowered while still respecting a person’s dignity for risk?
  • How do we approach care planning around behaviours and psychological symptoms of dementia that may place caregivers at risk or cause stress?
  • How might we explore real vs. perceived risks ('what ifs') with caregivers and/or family members?
    • How might we talk about a plan of care that incorporates real risks with caregivers and/or family members?

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.