Palliative Care for Patients with Dementia: From Diagnosis to Bereavement

Case 1

A 78-year-old widowed woman who lives in a nursing facility has an acute change in mental status. She is rushed to the local emergency department and found to have gallstone pancreatitis. As her condition begins to deteriorate, she is intubated and admitted to the intensive care unit. Surgery recommends an open cholecystectomy for the patient. When her family arrives to discuss treatment options, they reveal that she has severe dementia and has not been able to recognize anyone in her family for two years. They are not sure if her advanced dementia should impact their care decisions.

Case 2

A 73-year-old married man with moderate dementia presents with his wife for a routine follow up visit. The patient’s wife is the primary caregiver, and she gets little assistance from the rest of the family. She reports that her husband has become increasingly paranoid and is sometimes physically aggressive towards her. She then breaks down in tears and reveals that she feels she cannot care for her husband any longer. She has become depressed and is bitter about having to care for him by herself. She wants help for both her husband and herself but does not know where to turn. When the possibility of placing her husband outside of the home is suggested, she is surprised and confused. She is not aware of the treatment options and does not know what her husband would want.
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These cases illustrate the limitations of traditional dementia care. Dementia is often treated using a “curative” model, which is the typical approach to medicine. This model focuses on diagnosing the illness, treating symptoms, and trying to “cure” the underlying cause of the disease. However, dementia is not a disorder that medicine can cure. It is a chronic, progressive illness, much like emphysema or AIDS. Unfortunately, the curative model does not lend itself to chronic, progressive diseases, and its use can limit dementia care.

The Palliative Care Model

Another model of care, the palliative care model, was developed specifically for chronic, progressive illnesses. Palliative care focuses on maintaining quality of life and comfort for patients and for their families. It accomplishes these goals by addressing three, often overlooked, areas. First, there is an emphasis on meeting the patient’s and family’s physical, psychological, spiritual, and practical expectations and needs. Second, palliative care addresses issues of loss, grief, and bereavement. Finally, the palliative approach prepares the patient and the family for the management of self-determined life closure, of the dying process, and of death itself.

In a palliative care model, a multidisciplinary team cares for the patient and family throughout a life-threatening or terminal illness experience. This team can be comprised of physicians, social workers, pharmacists, nurses, nurse educators, nurses’ aides, physical and occupational therapists, case managers, counselors, psychiatrists, trained volunteers, support groups, and clergy. While it is most often used to provide end-of-life care, it is not limited to this time frame. Palliative care can be used to either enhance the “curative” model, or it can be the focus of care. As can be seen in the Figure, curative care is often the primary approach during the initial stages of treatment of a chronic, progressive disease.¹ Then, as the disease progresses, palliative measures come more to the forefront.

In recent years there has been an increasing awareness of palliative measures for patients with dementia.² However, much of the application remains limited to the severe and end-stages of the disease. This need not be the case. Palliative care principles can be applied to the entirety of dementia care. They can be incorporated into treatment, beginning at the initial visit, in order to provide better care for the patient and the family. Palliative care goes hand-in-hand with curative treatments in the early stages of the disease and becomes more of a focus as it progresses. By the time the patient reaches end-stage dementia, palliative care is the primary approach. This longitudinal approach to palliative care for patients with dementia is the focus of this article, and it encompasses three interrelated areas: planning, grief, and comfort care.

Planning for Dementia Care

The topic of palliation for dementia patients has received little attention in the literature, but what has been done shows it to be useful. Studies have demonstrated that palliative care for dementia decreases cost,³ decreases use of inappropriate interventions,⁴ and increases patient comfort.^3,4 In addition, it has been shown that palliative care in general increases patient and family satisfaction,⁵ results in better symptom management,⁶ and is preferred by patients and families.⁷

Proper planning is the first step in providing palliative care for dementia patients. It promotes a preventive approach to dementia care. Since dementia can progress over many years and often follows a known pattern of decline, it is possible to anticipate problems before they occur. By addressing the potential problems ahead of time, they can either be averted or be made less devastating. Proper planning could have avoided the problems in both of the presented cases above. In Case 1, the patient could not make care decisions, nor was there an advance directive or a medical power of attorney. As a result, the ICU team and the family were left to make difficult treatment decisions without knowing what the patient would have wanted. In Case 2, the patient’s wife did not know much about the course of the disease, what to expect as her husband declined, or what resources were available when she began to feel overwhelmed and depressed.

Planning does not need to be emphasized at the time of diagnosis. The patient and the family are often overwhelmed at the beginning. However, the concept of planning should be introduced at the initial visit as a part of the comprehensive care plan. It should then be discussed at future visits in order to develop a care plan that is satisfactory to both the patient’s and the family’s wishes. Early planning is helpful in a number of different ways. For example, it allows the patient to give their care preferences before they become too impaired to make those decisions. In addition, planning can help to establish a sense of collaboration between the care team and the family, and it can bring the family closer together before the dementia progresses.

Good planning can only occur if the patient and family understand the course of the dementia. Therefore, proper education is the key. Some of the topics to include: stages of decline, burdens of caregiving at each stage, emotional impact, grieving process, financial burden, available resources, and end-stage care, including hospice. Then, once the patient and family have been educated, planning can proceed. Issues to address early in care include a living will, power of attorney, the financial situation, who will be the caregiver(s), and who will make treatment decisions. Over time, the planning will need to become more specific, such as addressing nursing facility placement, caregiver respite, medical treatment options, and the funeral. Discussing these topics can help to prevent problems, and all of the planning discussions and decisions should be noted in the chart.

Planning with the patient and their family is typically the job of the physician who is the most involved in caring for the patient’s dementia. The physician is the one who coordinates care and sees the patient for an extended period. Thus, the physician should have the time, opportunity, and understanding to address all of the issues that need to be planned for. Coordination with other multidisciplinary team members, such as social workers, nurse educators, and case managers, is an important part of the planning process.

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Addressing the Family’s Grief

Addressing grief is another aspect of palliative care. A family’s grief over the loss of a loved one is a constant throughout the course of chronic disease, and it evolves over time. Immediately after diagnosis, there is the initial shock and grief over finding out that a loved one has a dementia. Patients and their families will show a variety of reactions, some of them being very intense. The provider needs to recognize acute grief as an issue and be able to guide the family through the shock of the diagnosis. It is important to acknowledge the loss, to give permission to grieve, and to always schedule a follow-up appointment. By addressing acute grief, the provider can ease the patient’s and the family’s transition from diagnosis into long-term care. It also helps to establish a collaborative atmosphere between the provider and the patient and the family.

While addressing acute grief is essential, it is even more important to follow up on the grieving process. Grief is an often overlooked part of care, even though it is common in caregiver reports.⁸ In dementia care, the family often deals with anticipatory grief, which is mourning the expected loss of their loved one. They know that they will lose that person but do not know when. They, therefore, grieve for multiple things including: loss of the loved one, loss of hope, loss of the future. The challenging part of anticipatory grief for dementia patients is that the disease often progresses over many years. As a result, there can be a series of grieving episodes, as the losses are pondered and reconsidered. It can become a dance between holding on and letting go. This situation is shown in Case 2. Here, the wife was suffering from a worsening of her grief as her husband’s behavior deteriorated. He was no longer the man she had spent so many years with, and it pained her immensely to see him in this state. Her grief likely made it more difficult for her to care for him the way she wanted to.

Anticipatory grief can be very difficult on the family. It can lead to feelings of guilt for wishing it was over, premature detachment from the loved one, and schisms in families. Therefore, the provider needs to ask at every visit how the family is handling their grief. Assure them that grief is a normal reaction, and offer additional resources to care for their loved one or for themselves. These resources can include other multidisciplinary team members: counselors, psychiatrists, trained volunteers, support groups, or clergy. Hospice organizations and medical centers often have many, if not all of these resources.

In addition, the provider should monitor for complicated grief. Complicated grief goes beyond the “normal” grieving process, in that the person begins to question who he or she is, and how he or she will survive without a loved one. The person can become hopeless and feel very depressed. As a result, complicated grief can be detrimental to both the family member as well as the patient. The wife in the second case was likely dealing with complicated grief, and it was affecting both herself and her ability to care for her husband. Useful criteria for the diagnosis of complicated grief, which is referred to as Prolonged Grief Disorder, have been proposed by Prigerson, et al⁹ and are included in Table I. If a family member is found to have Prolonged Grief Disorder, this diagnosis should be communicated to his or her own primary care physician. Medication, often elective serotonin reuptake inhibitors (SSRIs), is recommended, as well as referral to a therapist or psychiatrist.¹⁰

The final and often overlooked stage of grieving occurs after the patient has passed away, during the bereavement stage. Grieving is often renewed and worsened during bereavement, even though the family has been grieving throughout the illness. Therefore, it is important for the provider to continue palliative care during bereavement and reach out to the family to make certain they are adjusting to the death of their loved one.¹¹ This is a routine part of patients being cared for under hospice.

Ensuring the Patient’s Comfort

The final aspect of palliative care for dementia patients is ensuring the patient’s comfort. In recent years, medicine has done a better job with comfort care for severely demented patients. However, it is important to broaden the scope of comfort care and address it throughout the course of treatment. During the initial phase of dementia numerous steps can be made to ensure the patient’s comfort. The patient should be started on a cognitive enhancer in order to slow the rate of cognitive decline as much as possible. Also, cardiovascular problems need to be treated aggressively, as they can worsen memory. In addition, the patient may become frustrated by their memory deficits, which can lead to depression and anxiety.¹² These symptoms can be addressed through medications, such as cholinesterase inhibitors and antidepressants, or through support groups. Finally, the family should be involved in providing comfort care from the beginning. They need to be educated and aware of the patient’s limitations and try to avoid stressful situations, such as chaotic environments and conflict.

As patients progresses into the moderate stage of dementia, they are less able to care for themselves, and their behaviors can worsen. They may have paranoia, hallucinations, sleep disturbances, agitation, and aggression.¹³ These behaviors can be very difficult on the family and are a common reason for nursing home placement.¹⁴ The problem behaviors can be treated in three ways. First, there are medications, such as neuroleptics, that can help calm the patient. Second, it is important for providers to monitor for problems such as discomfort, pain, infection, and medical comorbidities that can contribute to the behaviors.¹² Third, the patient’s environment can be modified to minimize stress. The patient should be in a calm, familiar setting where distractions are limited and a routine is emphasized.

During the severe stage of dementia, comfort becomes central. Although there are often fewer behavioral complications, the care can become more challenging. Patients are unable to express themselves and unable to care for their basic needs. Therefore, the family needs to (re)learn how to care for their loved one, trying to recognize and to attend to his or her needs. In addition, the family needs to accept that aggressive, curative care measures are often at odds with comfort care. Treatments like tube feedings, intravenous fluids, cardiopulmonary resuscitation, and antibiotics may seem helpful but often are ineffective and can worsen the patient’s quality of life.¹²

Case 1 is an example of where comfort care should be considered. The woman has severe dementia and is being considered for a surgical intervention that may or may not save her life. But how is this intervention going to improve the patient’s life? What are the risks of morbidity and mortality? And even if she does recover, what are her life expectancy and quality-of-life going to be?

Some patients survive until the end-stage of dementia. By then, they are almost completely incapacitated, and their Mini-Mental State Examination score is zero. However, before a patient reaches this stage, hospice needs to be considered. At present, it is still an underused tool for dementia patients, but patients and families prefer it.¹⁵ Hospice can be used for patients who have an expected prognosis of six months or less, and therefore it can be considered for patients in either severe or end-stage dementia. Care is generally provided at home, and caregivers must sign a form agreeing to stop “curative” treatments and focus on comfort care. It is financially viable in many cases due to the Hospice Medicare Benefit, and because many state and private insurances cover it.

During hospice care, the patient’s physician continues to play a vital role. He or she decides when the patient meets the six-month criterion for hospice. The guidelines for this decision have been delineated by the National Hospice Organization. First, the patient must be at Stage 7 of the Functional Assessment Staging (FAST) criteria (Table II). He or she must have severely impaired activities of daily living, as well as comorbid medical conditions (Table III). Fortunately, while it can be difficult to say for certain that the patient with dementia has only six months to live, hospice can be renewed as long as the patient continues to meet the eligibility requirements.² Hospice uses all of the multidisciplinary team members, including the patient and the family.¹⁶

Conclusion

Palliative care is an important and powerful tool in dementia treatment. When it is applied at the beginning of care, it can help to avoid many of the problems in dementia treatment and improve the quality of life for both the patient and their family. The three areas of planning, addressing grief, and maintaining the patient’s comfort only require simple, often common-sense interventions. However, when these interventions are done throughout the course of care, the effect can be cumulative and eliminate much of the pain and suffering associated with dementia care.

The authors report no relevant financial relationships.