Factors Influencing Caregiving Decisions for People Living with Dementia

Caregiving decisions are never easy or clear-cut. This becomes even more complex when family caregivers, Power of Attorneys (POAs), or Substitute Decision Makers (SDMs) make decisions on behalf of their loved ones. Sometimes, the caregivers’ own values, personal histories, beliefs, finances, and time availability can further complicate the decision-making process.

Over the past few decades, we have noticed that decisions are not always made with the care recipient’s wishes in mind. This is why it’s important that all caregivers must be aware of the care recipients’ wishes and separate them from their own values, beliefs, and preferences when making decisions for someone living with symptoms of dementia.

Personal biases can cloud judgement, overshadowing the wishes and values of the person under their care. Ignoring the wishes of a person with dementia can lead to feelings of helplessness, frustration, and decreased quality of life. Honouring the wishes of the person with dementia is crucial, regardless of their cognitive or communication abilities.

 

Using a mindful approach to caregiving fosters an ethical, supportive and compassionate environment ensuring the person with dementia feels valued and understood despite cognitive challenges.

An example is when the person with dementia wants to maintain certain daily routines or religious practices, but the caregiver, due to time constraints or differing beliefs, finds it challenging to accommodate these routines. Additionally, a caregiver might prioritize practical considerations, such as financial stability and time management, which can conflict with the care receiver’s desire for frequent social outings or specific personal care routines.

These conflicts require sensitive negotiation and a balanced approach to ensure both the well-being and dignity of the person with dementia and the practical needs of the caregiver are respected. Involving third-party mediators, such as social workers or counsellors, can also facilitate constructive discussions and help reach mutually agreeable solutions.

 

Understanding the values, preferences, and wishes of a person with dementia involves active listening and observation. Here are some effective ways caregivers can gather this information:

Life History and Preferences: Caregivers should take time to learn about their loved one’s life history, significant events, and what they enjoy. This can involve talking to other family members, close friends of the person, their other caregivers, and the person themselves, as well as observing their reactions to various activities.

Advance Directives: Legal documents like advance directives and living wills can provide clear guidelines on the person’s wishes regarding medical treatment and end-of-life care.

Daily Conversations: Even if communication is challenging, regular conversations using simple language, pictures, or non-verbal cues can help understand the person’s current preferences. Remember that people living with dementia often communicate through their behaviour. By carefully observing their actions and reactions, caregivers can gain valuable insights into their preferences, triggers, and stressors. This observation helps identify activities, environments, and interactions they enjoy as well as situations they find distressing.

 

Beyond the immediate emotional distress, loss of identity, decreased quality of life, and strained relationships, there are further implications that can significantly impact the well-being of both the person with dementia and their caregivers.

Decreased Sense of Security: Ignoring the person’s preferences and needs can create an environment of uncertainty and insecurity for them. Without the familiarity and comfort that come from having their wishes respected, they may feel increasingly anxious and vulnerable.

Increased Behavioural Challenges: There’s always a reason behind the behaviour. Disregarding the person’s preferences can lead to an escalation of behavioural challenges, such as agitation, aggression, or withdrawal. When their needs are not met or their autonomy is undermined, they may express their frustration through challenging behaviours.

Deterioration of Physical Health: A lack of consideration for the person’s preferences can also impact their physical health. For example, if they have specific dietary requirements or mobility needs that are ignored, their overall health may decline, leading to complications and a reduced quality of life.

Loss of Trust and Resentment: Continuously disregarding the person’s wishes can erode trust and breed resentment between the caregiver and the care receiver. The person with dementia may feel betrayed or undervalued, leading to a breakdown in the caregiver-care receiver relationship and complicating future interactions.

Caregiver Burnout: The strain caused by neglecting the wishes and needs of the person with dementia can take a toll on the caregiver’s own well-being. Caregiver burnout, stress, and feelings of guilt or inadequacy may intensify, further exacerbating the challenges of providing care.

 

Caregiving for someone with dementia encompasses a multitude of intricate decisions shaped by diverse factors. Embracing a mindful approach, caregivers learn to prioritize the values, preferences, and wishes of the person with dementia. Additionally, a mindful approach to caregiving for someone with dementia mitigates caregiver bias in decision-making, prioritizing their loved one’s needs and wishes. By attentively considering their loved one’s needs and desires, caregivers forge a deeper emotional bond, cultivating a sense of fulfillment and connection amidst the challenges common to dementia care.