CAUTIONOne specific subset of Beers List medications[21], both prescribed and over the counter, known to have anticholinergic side-effects can compromise personal safety by causing worsening confusion and increased falls in patients with dementia. Commonly used anticholinergic medications to be avoided are diphenhydramine available over the counter and used for sleep, amitriptyline for depression, and oxybutinin for urge incontinence.
Because it is a disease of older adults, people with dementia often have co-existing chronic illnesses of various degrees that affect their digestive tracts, hearts, lungs, kidneys, livers, marrow and blood, spine, hands, feet and joints, eyes, and ears. This results in a significant symptom burden and clinical challenge to effectively assess and treat a person’s discomforts and distress. Clinicians must assess atypical presentations within a frequently complex landscape of co-morbidities and changing baseline of function and cognitive capacity. A wise clinician draws on the observations of nurses and other professionals and family caregivers in making assessments. Whenever a patient’s distress is severe or prolonged, evaluation and direct examination of the patient by a doctor are essential.
Dementias are rightly considered to be terminal conditions. Whether as a distinct progressive disease (such as Alzheimer’s or Pick’s) or in combination with other co-morbidities (as in the case of vascular dementia), dementias contribute to shortening affected people’s lives. In one Dutch study, only 14% of people with dementia survived to an advanced to late stage dementia[3].
Despite the prevalence of severe cognitive impairments, the health system does not always serve patients with dementia well. An example is a recent study finding that 19% of nursing home decedents with cognitive issues had at least one burdensome transition of care near the end of life. Burdensome transitions were defined as those that “occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life[4].” Nursing home residents in regions with the highest quintile of such transitions were significantly more likely to have a feeding tube, spend time in an intensive care unit (ICU) in the last month of life, have stage IV decubitus ulcer or have late enrollment in a hospice. Clearly, some of the suffering that people with dementia experience through the end of life is based in systems rather than the disease and should be amenable to systemic quality improvements.
Predictable patient and family needs – and essential elements of dementia care
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 are central to good care for patients with dementia. Clinicians caring for dementia patients are encouraged to discuss a full range of topics that affect a patient’s physical and emotional well-being. However, at a minimum, physician–patient or family education and care planning must include whether or not to institute potentially life-prolonging treatments, including cardiopulmonary resuscitation, mechanical ventilation, kidney dialysis, and medically administered nutrition and hydration. When trials of life-prolonging treatments are desired, it is helpful for physicians to prospectively discuss patients’ and families’ thoughts about when or under what circumstances the treatments could be withdrawn.
Additionally, 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 such needs may go unmet, resulting in unnecessary pain, strain, confusion, and suffering on the part of both patients and those who love them.
Specialist palliative care teams are increasingly available within hospitals, long-term care, and community healthcare agencies to assist in addressing the needs of both patients and families. Palliative care teams extend practical assistance in navigating health systems and coordinating care, as well as responding to patients’ physical, emotional, spiritual, and social distress and striving to enhance the quality of their daily lives. Hospice is the most familiar form of palliative care. Hospice programs deliver interdisciplinary team-based care to people who are dying, including the late stages of dementia. Hospice has been shown to benefit both patients and families[5]. Hospice services are typically available to support families in caring for patients in their homes, but a hospice can also serve patients in long-term care settings in conjunction with facility staff.
In contemporary healthcare, medical services are intentionally problem based. Health services respond to core health problems of injuries and diseases. The corresponding goals of problem-based medicine are to cure, prolong life, and restore function. These goals determine how clinicians assess patients and develop treatment plans. In the context of patients with dementia, often with significant co-morbid 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 beyond cure or maximizing function to ensuring a safe and comfortable dying experience. In caring for people facing the end of life, more medical treatment does not always represent better care.
This chapter outlines a practical palliative care approach to caring for people with dementia and their informal caregiving network of family and friends. Our “Watch Over Me” approach is offered as a guide for neurologists, as well as non-neurological clinicians, students, and allied professionals of many disciplines in framing and planning care for dementia patients and their families (http://coryingrammd.com/file/Watch_Over_Me.html). The approach is based in trust and responsive to the affected person’s and family’s individual values, priorities and preferences, fears, and hopes. It extends to communication with patients and their families in the process of shared decision making, care planning, and anticipatory guidance for life completion and closure.
For over 2 years, she has been unable to consistently recognize her family. For the last 9 months she has been dependent on others for bathing, dressing, and eating. She no longer has control over her bowel and bladder functions. She requires assistance by two nurses to transfer from bed to chair in the nursing facility.
Over the past 5 years Mrs J has been in four different nursing facilities, changing facilities twice in the last 6 months. Now she is intubated, sedated and on pressure support ventilation in the ICU. As you enter the room, you recognize Sally, one of her four children, whom you met during a previous admission. Sally sits at her mother’s bedside with her head in her hands. She looks up and acknowledges you, dries her eyes, and gently drapes a rosary around her mother’s limp left hand.
“Here we are again,” she says to you, her half-smile and tone of voice apologetic. “I got a call from the nursing home that Mom was coughing and had trouble breathing. I didn’t know what else to do. I talked with my sister and brothers. We’re just not ready to ‘pull the plug’.”
Disease trajectory, dementia treatment, and prognosis
On average, persons with Alzheimer’s disease have a life expectancy of 8–10 years after diagnosis. The disease trajectory charts a jagged arc of predictable but often stuttering decline, commonly characterized by episodes of acute illness resulting in functional worsening and most often a recovery to a new, lower baseline. Prognosis in these conditions pertains not only to life expectancy but also to prospects for both future functional capacity and caregiving needs. Common life-altering illnesses for people with dementia are infections of the respiratory and genitourinary tracts, in addition to falls with fractures, commonly of the humerus, pelvis or hips. In far-advanced stages of dementia, some people lose interest in eating and drinking and may even push away a spoon or cup. Injuries and changes of this nature often herald the final phase of a dementia patient’s life.
Treatments to maintain cognitive function or slow disease progression, such as cholinesterase inhibitors and N-methyl-D-aspartate (NMDA) receptor antagonists, have been addressed in earlier chapters of this volume. Clinical science has yet to answer the question of when or under what circumstances such medications should be withdrawn because they will yield little or no benefit, even if they are not causing adverse effects. In dire situations such as the ICU scenario of “Mrs J”, most clinicians and caregivers would agree that there is no value to continuing such medications. Expert consensus would suggest that these medications are unlikely to improve the condition of bedbound, otherwise dependent, non-verbal patients in any meaningful way. In earlier stages of dementia, when there are valuable functions to maintain, such as recognizing family or being able to interact, and assisting in self-care, most clinicians recommend, and most patients and families agree, that if such medications are well tolerated, they are worth continuing.
Patients who have recently been diagnosed with dementia, particularly those in the early stage of progressive dementia, and their families commonly seek treatments for the disease. Early on, they are discouraged to discover the paucity of disease-modifying options currently available. Patients and families require education to adjust to the new reality of the diagnosis as well as to anticipate coming changes and plan for the future. Plans of care must respond to a patient’s and family’s current needs and strive to avoid crises along the way. Comprehensive care for patients with dementia and their families includes skillful support for making medical decisions in ways consistent with their personal values and preferences.
Whole-person and family-centered care encompasses assisting people in achieving a sense of life completion and closure, including, if they so choose, leaving a personal legacy, fulfilling individual and family values, roles and responsibilities to one another, and fostering a sense of celebration for the affected person and their family.
SCIENCE REVISITEDThe clinician can use the CAM-ICU test at the bedside to test for inattentiveness and disorganized thinking. The test is quick, easy, and inexpensive. The development of delirium is associated with an increased risk of mortality. This may be a good opportunity to revisit goals of care and advance care planning with the patient and family.
Alleviating suffering and improving quality of life
Alleviation of suffering and improving quality of life are key goals in caring for people with advanced dementia – and they are core goals for the discipline of palliative care.
Patients with dementia are at high risk of receiving inadequate assessments and treatment for physical discomfort. Evaluating pain and other physical distress in a patient with advanced dementia can be difficult. The limitations of cognition and communication must be approached by the clinical team in a systematic fashion. The pathogenesis of dementia typically does not alter pain pathways. However, neurodegenerative changes of dementia commonly affect people’s perception of pain and their affective responses. Patients may not be able to localize pain, verbally describe or otherwise express their discomfort. A targeted physical examination is often necessary to uncover the location and cause of physical distress.
Self-reporting is the gold standard for documenting the frequency and rating the severity of pain, but because self-reports may be inconsistent, incongruent with clinical observations, or simply unfeasible in patients with dementia, behavioral and observational criteria have been developed. The Checklist of Non-verbal Pain Indicators takes non-verbal vocalizations, grimacing, wincing, bracing, rubbing, restlessness, and vocal complaints into consideration[6].
Patients with dementia may also demonstrate particular clinical patterns that represent their own individualized pain or physical discomfort signature. Such patterns may include withdrawal from social activities, agitation, wandering, insomnia, and stopping eating. Sometimes patients with even mild-to-moderate dementia will only exhibit signs of distress, irritability or agitation and be found to have a urinary infection, compression fracture, toothache, or zoster. Arthritis or degenerative joint disease is the most common source of pain in people with dementia.
Optimal management of pain and other physical distress typically depends on elucidating the etiology of the symptoms. That being said, there are a few caveats and things to keep in mind in treating pain in patients with dementia. Acetaminophen can be safely used in doses less than 4 g per day in most elderly patients, and 3 g a day in those with mild-to-moderate liver disease. A therapeutic trial of acetaminophen may be useful to see if it improves mood or behavioral signs of discomfort. Non-steroidal antiinflammatory medications carry the risk of both gastric and duodenal ulceration and renal compromise. Opioids have no tissue toxicity and may be used safely if dosed according to basic guidelines and principles of opioid prescribing. Opioid-naive patients with advanced dementia can be started on scheduled, low-dose short-acting opioids given by mouth. Pro re nata (prn) medications are difficult to use due to limitations of self-reporting. However, in settings such as special memory loss units, prn medications can be used based on serial observations by experienced nurses and other direct care staff. Side-effects commonly include constipation, which must be treated with laxatives, and transient, mild worsening of confusion to which most patients will accommodate over time.
Palliative care approaches dying as a difficult but normal stage and process of life[7] and extends the concept of quality of life to a person’s dying experience. In addition to treating pain and associated bodily discomfort, palliative care strives to improve quality of life for patients and caregivers. Quality of life is inherently subjective. Simply put, it is how a person feels. Quality of life can be thought of as ranging on a linear scale from distress, suffering, and even agony, at one pole, to comfort, contentment, and joy at the other. Early in the course of progressive dementia, a patient may be able to express their quality of life, while in later stages, the assessment of quality of life usually turns on the observations of family members, lay caregivers, or professionals.
The perceived quality of a person’s life informs decision making related to medical treatments and to the choice of supported living arrangements
Activities of daily living and dementia staging simplified
The tasks of navigating our days and world have been aptly divided into activities of daily living (ADL) and instrumental activities of daily living (iADL) and a checklist or inventory of ADLs and IADLs is essential when staging dementia. A simple approach to remembering the difference is to think of ADLs as everything you do in the morning to prepare yourself for the day, such as bathing, dressing, transferring, toileting, grooming, and feeding yourself. IADLs are everything you do after you are ready for the day to navigate the world, such as managing finances, transportation, medication, communications, laundry, house work, shopping, and cooking.
Reisberg defined seven stages of dementia[8]. As with the inventory of ADLs and IADLs, the simplification of a range of conditions into stages can be useful in understanding patients’ experience, anticipating and preparing for pertinent issues and problems. In stage I, there are no clinical symptoms. Stage II is characterized by a person complaining about forgetfulness. In stage III other people typically begin to notice a person’s functional deficits. A hallmark of stage IV is the impairment of one or several IADLs with preservation of ADLs. Because of disorientation and progressive loss of IADLs, stage V is often described by the saying “All dressed up and nowhere to go.” People in stage V appear well dressed and ready for the day but they are disoriented and unable to perform most IADL’s – hence, all dressed up and nowhere to go. Stage VI is marked by incontinence, an inability to recognize loved ones, and wandering. It can be thought of as the “Velcro” stage in which people tend to cling to others, particularly in dementia facilities or nursing homes. In stage VII a person is dependent in ADLs and can only speak a few words. They are dependent on others for mobility such as rotation in bed and transfer for toileting and wheelchair. Most time is spent in bed unable to effectively communicate with others.
End-of-life care in dementia can be thought of as spanning stages V, VI, and VII, and may progress over many months or several years. In stage VII patients are dependent in ADLs and clearly approaching the end of their lives. Unfortunately, at present only in the later sub stages of stage VII, when the affected person is unable to ambulate or speak more than six words in a day, are patients with dementia eligible to receive hospice care under current Medicare criteria.
Families’ journeys and supportive counseling
Whenever one person receives a serious diagnosis, a family experiences the subsequent illness. A core principle of palliative care sees each patient’s family as part of the unit of care. Virtually every patient with advanced dementia has a family, whether by blood, marriage, or friendship. For an elderly person with advanced dementia, family can be expressed by the phrase, “for whom the person matters.” Operationally, a frail person’s family encompasses the people who visit, call and physically care for the person, which often includes long-time nurses, aides, and housekeepers.
Physicians and clinical teams can support each family member and guide a cohesive process of making decisions and providing care. Children, parents or siblings of the person with dementia can be expected to have discernible styles of relating to one another – and making decisions – that have been formed by their personal histories and family culture. An understanding of the family system can help in counseling patients and family members in coping and caregiving throughout the illness. The dominant personalities and decisional style of a family often become apparent over time. There may be insiders and outsiders in a family’s patterns of conversing, making decisions, or providing care. Distance, time, and financial resources may all contribute, but a family’s history and its members’ personalities also shape the ways in which people approach these difficult situations. Clinicians can astutely take note of these family characteristics, without judging which members of a divided family are right or wrong. Observations of a family’s style, which may vary by ethnic culture, are valuable in counseling people who are struggling not only with treatment decisions, but also with the physical, emotional, and social strains of a loved one’s dementia. Skillful clinicians can identify sources of strength within families and guide members in coming to agreement and, correspondingly, avoiding conflict.
Having someone they love become seriously ill naturally makes people feel emotionally vulnerable; it evokes worry, anxiety, and fears. Supportive counseling for a family member of a patient with advanced dementia can start by “stating the obvious.” We have found that this puts family members (including a patient’s close friends) at ease and builds a therapeutic alliance to say aloud that it is apparent how much they love and are worried about the person who is our patient.
Similarly, during family meetings for the sake of making decisions, when differences of opinion are voiced – or tempers flare – between family members, it is often helpful to explicitly acknowledge that despite disagreements, everyone present loves the person who is ill and therefore, everyone present is hurting. Clinicians can add that people come at these decisions differently – and we may or may not be able to come to an agreement about whether and for how long to use specific treatments – but each one is trying to do what they consider right and best for the person.
A family’s journey – from prediagnosis, through the diagnosis, early treatments, corresponding changes in personal plans and shifts in roles, through chronic care, shared care, institutionalized care, and ultimately through the end of life and into grief – will be as unique as a fingerprint. Yet within the singular, personal experiences of every patient and family there are predictable challenges, decisions, and dynamics that every family is likely to encounter.
When an elderly mother or father becomes affected with dementia, adult children commonly feel conflicted about making decisions, sometimes against the parent’s wishes. Common examples are a decision to no longer allow the person to drive, use the stove or a credit card.
We have found it helpful to present these challenges as developmental stages within the lifecycle of a family. During adolescence, parents often need to enforce limits for the safety and well-being of the teenager, even when it makes the young person angry and causes a scene. To do otherwise would be irresponsible. When dementia robs a parent of the ability to safely drive or use a stove top, it is only responsible for the children, who were once those teenagers, to set limits, even if doing so makes their mother or father angry – and causes a scene. Most families eventually come to realize this on their own, but anticipatory guidance by a clinician can facilitate the process, avoiding a lot of confusion and guilty feelings along the way.
Decision making and advance care planning
Individuals who engage in advance care planning (ACP) are likely to see several specific benefits for themselves and their loved ones. The person with dementia is more likely to have their end-of-life desires known and followed. They experience a better quality of life and endure fewer invasive procedures and fewer ICU admissions at the end of life. Their family experiences less stress and more satisfaction. The costs of their care – to families as well as Medicare – are correspondingly less. Advance directives have been shown to decrease family conflict and distress, be associated with fewer transfers to hospitals, less death in hospitals and in ICUs, less use of cardiopulmonary resuscitation (CPR) and mechanical ventilation before death, and a higher likelihood that personal end-of-life wishes will be honored. Whenever possible, advance care planning should include the completion of formal advance directive documents. These documents can be emotionally challenging for patients and families to complete, but they can provide family members with clear authority to make decisions for their loved ones and, by clearly conveying the individual’s wishes, can alleviate the burden that families may feel in making decisions during future, life-threatening complications of the illness. Care planning that involves patients and their families in collaboration with the patients’ physicians and clinical teams is an ongoing process.
Related posts:
Diagnosis and Differential Diagnosis of Dementia
An Approach to the Problem of Normal Pressure Hydrocephalus
Depression: Cause or Complication of Cognitive Decline?
After the Diagnosis: Continuing Neurological Care of the Outpatient with Dementia
Using Psychotropic Medications to Manage Problem Behaviors in Dementia
Young Onset Dementia: How Much Diagnostic Testing is Enough?
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
