PREDICTABLE CAREGIVING NEEDS OF PERSONS WITH DEMENTIA

From the moment the diagnosis is made or even suspected, affected individuals and their families have several predictable needs. They need access to information, and if it is not available in the doctor's office, they need to be referred to sources of reliable information, which may include advice regarding credible online resources. People need support in adjusting to the current and future implications of the illness. Support in this context means more than a compassionate ear. Supportive counseling often entails significant time invested in understanding the particular details of people's lives, values, and perspectives so that professional caregivers can help them understand the impact of the diagnosis and functional prognosis on the person's or family's living situations, plans, hopes, and fears. From the beginning of the illness, it is important to involve patients and their families in an ongoing process of education about their condition and shared decision making to identify patient-centered medical goals and plan for predictable medical decisions and contingencies. This includes having specific crisis management plans.

Such counseling and care planning is central to good care for patients with dementia. Clinicians caring for patients with dementia are encouraged to discuss a full range of topics that impact a patient's physical and emotional well-being. However, at a minimum, physician–patient and family education and care planning must include whether or not to initiate potentially life-prolonging treatments, including CPR, mechanical ventilation, kidney dialysis, and medically administered nutrition and hydration. When trials of life-prolonging treatments are desired, it is helpful for physicians to discuss in advance patients' and families' thoughts about when or under what circumstances the treatments might be withdrawn.

In addition, family members and friends who are, or will soon be, caregivers need training and practical support, as well as information, tips, and resources for their own health and well-being. It sounds reasonable and straightforward, but these basic services are not always readily available and at present such needs may go unmet. The result is unnecessary pain, strain, confusion, and suffering on the part of both patients and those who love them.

Specialist palliative care teams are increasingly available to assist in addressing the needs of both patients and families. Palliative care teams can extend practical assistance in navigating health systems and coordinating
care, as well as responding to patients' physical, emotional, spiritual, and social distress and strive to enhance the quality of their daily lives. Palliative care teams and hospice share more in common than in differences. There is, however, one important difference. Palliative care teams provide holistic care to people living with dementia and their families and hospice teams provide palliative care to them when they are dying from dementia. Hospice programs deliver team-based palliative care to people who are dying, including in the very last stage of dementia. Hospice has been shown to benefit both patients and families (Torke et al., 2010). Hospice is typically available to support families in caring for patients in their homes and can also serve patients in long-term care settings in conjunction with facility staff.

In contemporary medical practice, efforts are problem based; basically, the core problems are injuries or illnesses. The goals of medicine are to cure, prolong life, and restore function. Clinicians assess patients and development treatment plans. In the context of dementia, often with significant comorbid conditions, curing and restoring function are out of reach, and alleviating suffering and enhancing quality of life become paramount goals. Since death is inevitable, at some point the best care must extend to ensuring a safe and comfortable dying experience. In caring for people facing the EOL, more medical treatment does not always represent better care.

The trajectory of dementia is without question predictable. Certainly, fluctuations stutter the course. However, the overall trend is that of declining function.

 
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