A key point to consider is whether these symptoms significantly affect daily living. A typical age-related change may be sometimes forgetting names and appointments, but remembering them later.
In fact less than 5 percent of the 5 million cases are a direct result of hereditary mutations e. Often these patients are still in the most productive phases of their life and yet the onset of the disease robs them of brain function at such a young age. These individuals may still be physically fit and active when diagnosed and more often than not still have family and career responsibilities.
Therefore, a diagnosis of early-onset may have a greater negative, ripple effect on the patient as well as family members.
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The build up of beta-amyloid in the brain produces plaques that are one of the hallmarks of the disease. This gives scientists tremendous hope in terms of a large therapeutic window to intervene and stop the beta-amyloid cascade. The other half will take a placebo and will comprise the control group. Neither patient nor doctor will know whether they will be receiving the active drug, which helps eliminate any potential biases.
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What is critically needed are disease-modifying drugs: those drugs that actually stop the beta-amyloid in its tracks. Buy Now, Pay Later. Already a Subscriber? Log In Here. Please sign in with Facebook or Google below:. If you have an older Salon account, please enter your username and password below: sign in Forgot Password? Log Out. Nonphysician care providers also include self-employed geriatric care consultants, family counsellors, and home care aides.
It is important for nonphysician care providers who work in community and residential care settings to remember that persons living with dementia have medical care needs in addition to care needs related to the dementia. Persons living with dementia may see several doctors, therefore, having a consistent relationship with a primary care provider can help coordinate care and potentially prevent unnecessary hospitalizations. Family caregivers should expect that physicians and medical care providers across all health care settings should provide care to persons living with dementia in a manner that respects their personhood, takes into account the variable ability of individuals living with dementia to participate in or direct their health care, and reflects the high likelihood concerned family members should be involved and included in any medical decision making.
Like other older adults, persons living with dementia commonly suffer from high blood pressure, heart disease, diabetes, as well as other conditions that become more common with age. Medical issues can worsen cognition, and many people living with dementia have other conditions that can and do impact cognition. Unfortunately, it can be difficult to recognize when the person living with dementia is ill. Often, the only symptom one can see is the worsening of confusion or behaviors, which makes it very difficult to know if this is due to the progression of the underlying dementia or if there is a new problem to be addressed.
In order to assure that persons living with dementia and their caregivers receive medical care and other services that are consistent with their goals of care, they need to be first offered an explanation of the condition, its prognosis, and potential treatment options, including pharmacologic and nonpharmacologic approaches. There are evidence-based programs that support the process of identifying and diagnosing persons with dementia, provide on-going support to them and their caregivers, and help address their on-going and evolving biopsychosocial needs Callahan et al.
Further, speaking with persons living with dementia and their caregivers about the diagnosis and its prognosis does not need to be done in an overly negative manner that removes hope. Instead, an approach that acknowledges and incorporates the many advances that have been made in addressing the medical and social needs of the person living with dementia and their caregivers is recommended. Persons living with dementia and their family members often fear that after the diagnosis, their physician will abandon them because there are currently no disease modifying treatments available Boustani et al.
Medical care providers also have a unique opportunity to educate the person living with dementia and their family members about what to expect over the course of disease. Indeed, the needs of persons with dementia can be expected to change over time. Medical providers can, additionally, provide referrals to available support services and can monitor judgment and safety issues so that the person living with dementia can remain independent and community-dwelling for as long as possible Boustani et al.
Nonphysician care providers can play an instrumental role in supporting person living with dementia and their care partners after they have been diagnosed by their physician. One of the more common complications that can arise in the care of persons living with dementia is the development of behavioral disturbances. This information is most often obtained from family members or a nonphysician care provider. These individuals may be most able to describe whether this is a continuation of an old behavior that should come to medical attention for some other unrelated reason or describe accurately if this is a new or worsening symptom.
This framework consists of predisposing factors inherent to the individual which set the stage upon which precipitating factors then cause the concerning behavior to occur.
Precipitating factors might include the use of sedating or stimulating medications, the presence of untreated pain, exposure to frightening or disturbing stimuli, the inability of the individual to get adequate rest, the removal of the person from his or her usual environment or normal routine, and the development of delirium Inouye, As noted above, medications can be the cause of newly developing behavioral disturbances among persons living with dementia. The astute family member and nonphysician care provider should be suspicious when a new or concerning behavior occurs soon after a new medication has been started.
The Encyclopedia of Alzheimer's Disease (Facts on File Library of Health & Living)
Similarly, concern should be raised if the person living with dementia develops new behavioral symptoms and may not be receiving their medications as they have been prescribed, either because the medicine is being taken at the wrong dose or it is being taken too frequently, not frequently enough, or at the wrong times.
As adults age, their bodies process medications differently than they did when they were younger and as a result, there are medications that some persons living with dementia have taken for years but no longer tolerate as their body ages and as their brains become more vulnerable with the worsening of their condition. Of particular concern is the use of anticholingeric medications in older adults and the negative impact on cognitive function.
The physician should welcome this type of information and these types of conversations as they help the family and nonphysician care providers deliver care that is personalized and appropriate to the needs of the person living with dementia.
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Physicians and other medical care providers that are not welcoming or supportive of person-centered care for the person living with dementia and participatory care with the family caregiver, may not be the most appropriate provider for the person with dementia and caregiver dyad. Family caregivers and nonphysician care providers should expect that the medical provider will start with the lowest effective dose of a medication then reevaluate the person living with dementia for anticipated side effects and effectiveness of the medication before deciding whether to continue the medicine, increase its dose, or discontinue it.
A useful tool to consult when evaluating the need to start, continue, or discontinue a medication for an older adult and particularly those with dementia is the Beers List AGS, Examples of these include benzodiazepines, like lorazepam which may be used to address anxiety but can increase the risk of falls or confusion in an older adult, or anticholinergic medications, like diphenhydramine which may be used to treat allergic symptoms in an urgent or emergent situation but can cause confusion or fatigue in a vulnerable senior and should not be used for treating either sleep issues or anxiety.
Asking medical providers about the necessity of all prescribed medicines and understanding the indication for their use can be an important way for family caregivers and nonphysician care providers to be effective advocates for persons living with dementia. While medicines are clearly an important precipitant of behavioral disturbances among older adults, there are other important causes to consider. Research by Husebo and colleagues that measured and treated pain in a large sample of nursing home residents with late stage dementia, showed that significant results in reducing pain and agitation were found with a relatively simple intervention and protocol that has been long approved by the American Geriatrics Society Developing an effective approach to the management of pain among persons living with dementia does not need to be complicated or to rely on the use of powerful pain control medications such as opioids; pain can potentially be controlled with milder medications that do not come with significant side effects at usual doses.
Similarly, there is evidence that the use of acetaminophen, the main ingredient in a common over-the-counter pain medicine, can decrease agitation among persons living with dementia Corbett et al. Other common causes of behavioral disturbances among persons living with dementia can include exposure to frightening stimuli, sleep disruption, and the development of delirium. Frightening or misunderstood stimuli can lead to behavioral disturbances that occur with bathing or with cleaning after toileting.
Others, whether brought on by persons that remind the older adult of an unpleasant former acquaintance or that cause confusion, can take more detective work to identify. Finally, delirium is a condition in which persons, particularly those with dementia or other conditions which make their brains more vulnerable, typically display new and fluctuating symptoms of inattention and either disorganized thinking or altered levels of consciousness.
Behavioral and psychological symptoms of dementia BPSD may become necessary. Managing BPSD is critical because the incidence of these have been shown to result in premature institutionalization, increased financial cost, increased caregiver burden, poor quality of life for the person with dementia and their family caregiver as well as increased nursing stress de Vugt et al. When providing care for a person living with dementia, nonpharmacological interventions are preferred and should be tried first. Research on the effectiveness of nonpharmacological interventions has increased over the past few years and the interventions discussed below have shown positive impact on both the person living with dementia and the family caregiver.
Indeed, a recent systematic review of systematic reviews in this area, found that while methodologies and sample sizes vary, music therapy and behavioral management techniques proved most beneficial overall Abraha et al. Activity and recreation have been shown to be beneficial to the person living with dementia. Encouraging participation in daily chores and maintaining hobbies and shared past activities have been shown to improve mood, reduce agitation, and improve quality of life for persons living with dementia. Twenty to sixty minutes of activity daily with skill level and interest well matched to that of the person living with dementia have been shown to have the most benefit de Oliveira et al.
Educating family caregivers has been shown to be as effective at reducing agitation as medications de Oliveira et al. Among the important things for family caregivers to learn is that a person living with dementia does not behave in these ways intentionally. Knowing this can help avoid conflicts, anger, and subsequent feelings of guilt. Persons living with dementia cannot be held responsible for their behaviors, but all behavior has a purpose.
It is up to the family caregiver to look for that underlying purpose. For example, a person living with dementia may be agitated and wander around the house because he has forgotten where the bathroom is and he needs to use it. Or a person with dementia may constantly disrobe because she is too hot. The family caregiver should not blame the person living with dementia for these behaviors but should remain calm, try to figure out what is causing the behavior, and redirect the person living with dementia while protecting his or her dignity Guerriero Austrom et al.
Nonphysician care providers can help to remind family caregivers that the person with dementia is no longer acting with volition. A person living with dementia will need care for many years. Nonphysician care providers play an important role in supporting families as they grieve. Exercise programs also have been shown to be beneficial in reducing agitation. Despite best intentions, pharmacologic management of the behavioral and psychological symptoms of dementia BPSD may become necessary. It is important for nonphysician care providers to understand the basics of medications used to treat symptoms in person living with dementia.
Dementia-specific medications, such as acetylcholinesterase inhibitors and NMDA agonists, have received approval from the U. These medications are prescribed with an aim of decreasing the rate of cognitive decline associated with the disease. It should be noted that there has been particular concern raised by the use of antipsychotic medications among persons with dementia given research that is shown an increased risk of stroke and death associated with their use Douglas and Smeeth, ; Gill et al. Careful evaluation, discussion with caregivers, and monitoring of persons with dementia would be warranted if use of antipsychotic medications were to be initiated.
As with any medication started for an older adult, it is recommended that the need for continued use of these medications is reviewed periodically, that attempts be made to decrease their dose, and their use be discontinued when possible.
As always, nonpharmacologic approaches to the management of dementia symptoms are preferred and it should be considered that the concurrent use of nonpharmacologic approaches may decrease or eliminate the need for use of prescribed medications to address concerning behaviors. These data underscore the vulnerable state of persons living with dementia who develop an acute illness.
Preparing for a crisis before it occurs can be an important step that caregivers and community care providers take to ensure that persons living with dementia receive optimal care. One of the most important steps that family caregivers can and should take to ensure that they are able to represent the person living with dementia is to participate in advance care planning discussions early in the state of the illness, while substantive conversations about wishes can still be had.
While many states recognize the right of family members to make medical decisions for loved ones when they can longer speak for themselves and have established clear hierarchies of precedence for delegating decision making powers among relatives, not every state does so. Forms to complete these designations are often available through state and local governments, local hospitals, and elder care attorneys. Forms frequently need to be notarized and may need to be filed with a local authority, depending on the jurisdiction, so it is recommended to verify the appropriate procedures for setting this in place with an entity familiar with local laws and regulation.
Nonphysician care providers can be a support to families as they navigate the process. From these conversations, it may become clear that the person living with dementia may wish to place limitations on the type of care that they receive if they were to become ill. In some areas, it may be possible to discuss end-of life care decisions with the physician or other medical care provider whether or not the person with dementia and their health care representative wish to put in place a do not resuscitate order often called a DNR, that would direct emergency services personnel not to start resuscitation in the event that the person living with dementia were to experience cardiac arrest or needs assistance in breathing.
Importantly, these orders still allow Medical care providers to offer treatments that would keep the person living with dementia comfortable, but without interrupting the natural course of events. These forms, when completed, help delineate what types of care persons with serious illnesses seek to receive and forego towards the end of their lives. Beyond these considerations, caregivers may wish to keep critical materials, including lists of medications, active medical conditions, names of treating providers, together in a folder that is easily accessible and can be brought to the emergency department or hospital if the person with dementia needs emergency care.
Given that persons with dementia may have a hard time navigating an emergency department or staying in a hospital room on their own, it may be necessary for their caregivers to stay by their bedside to serve as their advocate, provide comfort to them, and explain to them what is happening. Such tasks can be exhausting and many caregivers find it helpful to establish a network of friends and family who potentially can rotate serving in these roles if extended medical care is needed.
Negotiating networks of people who would be willing to step in if the need were to arise ahead of time can be useful to maximize the likelihood that these tasks do not fall back on one person, who may become easily overwhelmed.
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Again, nonphysician care providers can be a huge support to families as they plan for end of life care and decisions. On-going medical management for persons living with dementia is complex and can last for many years. Helping persons living with dementia and their family caregivers negotiate the medical maze over the course of the disease can reduce stress, improve care and the quality of life for both persons with dementia and their caregivers.
Recommendations for ongoing medical management to maximize health and well-being for persons living with dementia. Nonphysician care providers who work with persons living with dementia and their families in community or residential care settings should:. Nonphysician care providers must adopt a holistic approach to providing care and ongoing support to the person living with dementia and their family caregivers.
They should work to reduce existing barriers to coordination of medical and nonmedical care and support. Adopting a positive approach towards care can reduce real or perceived messages of hopelessness and helplessness and replace these with positive messages and an approach that encourages persons living with dementia and their caregivers to seek support and care over the course of the disease. Seek to understand the role of medical providers in the care of persons living with dementia and the contributions that they make to care.
Nonmedical care providers and family caregivers should work with medical providers towards developing a shared vision of care to support the person living with dementia. Common comorbidities can negatively impact a person living with dementia, and conversely, a diagnosis of dementia can make the treatment and management of comorbid conditions quite challenging. Encourage persons living with dementia and their families to use nonpharmacologic interventions for common behavioral and psychological symptoms of dementia first.
Increasing evidence suggests nonpharmacological interventions are effective at managing behavioral and psychological symptoms of dementia. Community care providers should encourage persons with dementia and their families to try these interventions first before considering pharmacological treatments.
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