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Life Adjustments for Memory Loss, Alzheimer's Disease, and Dementia
SECTION V Additional Issues
Chapter 25
Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
QUICK START: LIFE ADJUSTMENTS FOR MEMORY LOSS, ALZHEIMER’S DISEASE, AND DEMENTIA Issues in Mild Cognitive Impairment and Alzheimer’s Disease Dementia in the Very Mild and Mild Stages • Patients with mild cognitive impairment and very mild Alzheimer’s disease dementia may be able to drive: • A family member should ride in the passenger seat monthly while the patient is driving to help assure that the patient is driving safely • Driving should stop either when the patient reaches the mild stage of Alzheimer’s disease dementia or when the family member is uncomfortable riding in the car • When the patient does not want to stop driving, a formal driving evaluation is available at most rehabilitation hospitals. • Patients with mild cognitive impairment and Alzheimer’s disease dementia at any stage need to have their financial affairs supervised: • Family members or legal representatives should monitor all financial matters • The patient should be protected from telemarketers and other unscrupulous individuals soliciting monies and investment • Independent financial investing should cease immediately. • Patients with mild cognitive impairment and both very mild and mild Alzheimer’s disease dementia may be able to continue working • Working is healthy from the patient’s perspective • The patient will need to be in a supervised setting • The job should entail no risks or dangers to the patient as well as relevant co-workers, customers,
or consumers if problems in job performance were to occur. Issues in Alzheimer’s Disease Dementia in the Moderate and Severe Stages • In general, patients with moderate to severe Alzheimer’s disease dementia should not be left alone. • Home health aides and homemakers can provide assistance to patients and respite to caregivers: • Home health aides help with the patient’s personal needs, such as bathing • Homemakers help with household chores, such as cooking and laundry. • Day programs provide a healthy routine for the patient and respite for the caregiver: • Start at least two days per week; increase as needed • Call it a “club.” • Assisted living is ideal for patients who need more care than can be provided in the home when there is not a ready caregiver available. There are a large variety of assisted living facilities: • Some are almost independent living facilities, some are almost nursing homes, and some are in-between • Unfortunately, most insurance does not pay for assisted living facilities. • Long-term care is necessary for almost all patients with dementia at some point in their illness: • Encourage families to plan ahead • The family should look for a facility that they like and is close to home • Units that specialize in dementia care are ideal, if available.
See also Chapter 22 for additional discussion of many of these important topics.
236
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
Mild Cognitive Impairment and Alzheimer’s Disease Dementia in the Very Mild and Mild Stages
237
disease have motor vehicle accident rates similar to 16- to 19-year-old drivers. Since we allow 16- to 19-year-olds to drive, the conclusion was (and we agree) that it is reasonable for patients with very mild Alzheimer’s disease dementia to be allowed to drive as well (Dubinsky et al., 2000). (See Chapter 4 for details on distinguishing the very mild from the mild stage of Alzheimer’s disease dementia.) However, even if it is safe for patients with very mild Alzheimer’s disease to drive in general, how do we know if it is safe for the particular very mild patient sitting in our office to drive? In 2010 the American Academy of Neurology published an update to their practice parameter paper which helped to identify additional risk factors for unsafe driving (Iverson et al., 2010) (see Fig. 25-1).
DRIVING Driving is one of the most difficult issues that arises and will need to be addressed with almost every patient with dementia. How do we know if the patient in our office is safe to drive? Cognitive assessments have, unfortunately, been disappointing in their ability to identify which patients with cognitive impairment should and should not be driving (Wernham et al., 2014). In 2000 the American Academy of Neurology published a practice parameter paper based upon a meta-analysis of the available literature. The main finding was that patients with very mild Alzheimer’s
CDR 0.5 –1.0
CDR 2.0
Evaluate for risk factors Level B evidence
Level C evidence
Other
Risk factors Caregiver report of marginal or unsafe skills History of citations History of crashes Driving <60 miles/week Situational avoidance Aggression, impulsivity MMSE ≤ 24 Alcohol, medications, sleep disorders, visual impairment, motor impairment
Risk factors: None
Few
CDR 0.5 CDR 1.0 CDR 0.5 CDR 1.0
Several CDR 0.5
Relatively low risk Risk management • Encourage family support for alternate transportation • Strongly consider voluntary surrender of driving privileges • Consider DMV referral or professional driving evaluation, based on state guidelines
Multiple CDR 1.0
CDR 0.5
Relatively high risk Intervention pursuant to state guidelines
FIGURE 25-1 Possible algorithm for evaluating driving competence and risk management in patients with dementia. (From Iverson, D.J., Gronseth, G.S., Reger, M.A., et al., 2010. Practice parameter update: evaluation and management of driving risk in dementia. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 74, 1316–1324.)
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SECTION V Additional Issues
This updated practice parameter is helpful but, even if it is safe for the patient to drive today, what about next week or next month? If it is determined that the patient with very mild Alzheimer’s disease is safe to drive, we recommend that each month a family member ride as the front-seat passenger with the patient driving along his or her regular routes. For the most part, as long as the family member feels comfortable riding in the car with the patient driving, then we feel comfortable for the patient to continue driving. Driving should stop when either the family member no longer feels comfortable riding in the car, accidents or near accidents occur, or the patient progresses from the very mild to the mild stage of Alzheimer’s disease dementia. If there is a controversy between the patient and his or her family, we recommend a formal driving evaluation, which can be done at most rehabilitation hospitals. These evaluations are (unfortunately) unlikely to be covered by insurance, and cost several hundred dollars. But they are much less expensive than a single accident. Lastly, informational driving decision aids (short booklets) are being developed to help patients and families make good decisions around driving when cognitive impairment and very mild dementia are present; future studies will show whether these decision aids are beneficial (Carmody et al., 2014). PAYING BILLS, CREDIT AND ATM CARDS, AND INVESTING Having difficulties paying bills is often one of the first signs of memory loss. Some patients will forget to pay their bills, leading to loss of important services such as heat, electricity, and telephone. Other patients will pay bills twice. Some patients will have both problems. If a patient with mild cognitive impairment or very mild Alzheimer’s disease dementia is continuing to pay the household bills and do other banking duties, we recommend that their work be reviewed with a family member at least monthly to assure that no problems are developing. In our society it is easy to have rapid access to large amounts of money or purchasing power using automatic teller machines (ATMs) and/or credit cards. By the time the patient is in the mild stage of Alzheimer’s disease dementia it is usually prudent to remove access
to these cards. As described in Chapter 23, patients with ready access to cash can be easily exploited. Solicitations from unscrupulous individuals frequently appear in the mail and on the phone. We also know of several patients who, after their car was taken away to prevent them from unsafe driving, promptly went out and purchased another one, putting the down payment on their credit card! Even the most healthy and intelligent individual will sometimes make bad investments leading to significant financial losses. Investing is a complicated art, and depends upon being aware of the latest information along with good judgment and reasoning abilities (and of course a bit of luck). Given the complexity of investing, it is not surprising that many patients who eventually develop Alzheimer’s disease or another dementia will have made poor investments in the years prior to their diagnosis. The tragedy is that sometimes lifelong savings or retirement funds are lost within a short period of time. We recommend that a patient diagnosed with mild cognitive impairment or any type of dementia immediately relinquish any form of investing (Martin et al., 2013; Triebel et al., 2009). WORKING Should a patient with mild cognitive impairment work? As awareness of memory loss grows, and as more adults work into their 70s and 80s, there are more and more individuals who are working at the time of their diagnosis of mild cognitive impairment (and, more occasionally, very mild Alzheimer’s disease or other dementia). Whether individuals with mild cognitive impairment and very mild Alzheimer’s disease dementia should continue working depends upon the individual, their job, and how long they have been doing the work. If the individual has been doing the job for many years, it is likely that many of the manual and cognitive skills have already been consolidated in memory, and can therefore be maintained for a period of time (see Appendix C for more information on consolidation of memory). From the patient’s perspective, working is almost always a good thing: working typically provides a healthy routine, intellectual stimulation, socialization, and other helpful qualities such as maintaining feelings of self-worth and avoiding depression. From the
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
employer’s and society’s perspective, it depends upon whether the patient’s cognitive impairment disrupts the performance of the job and/or whether there are risks or dangers involved. For example, an individual with mild cognitive impairment could continue to work on an assembly line in which their task is procedural in nature (not requiring memory, judgment, or reasoning), is relatively circumscribed, and the person at the next stage of the assembly line will be aware of any errors made. Another example of an appropriate job to continue includes making handmade crafts such as pottery or articles of clothing; again the work depends largely on procedural memory (not affected by mild Alzheimer’s disease dementia; see Appendix C), and the quality of the work will generally be readily apparent. Inappropriate jobs to continue include those that involve supervision at almost any level, from watching children at a daycare center to managing a business. Other inappropriate jobs to continue include those that involve memory, judgment, and reasoning that affect people’s lives at any level, such as a clinical or legal professional. Sales jobs may be appropriate if the work is circumscribed, the patient is already quite experienced, and the supervision of the patient is appropriate. For example, one of our patients was able to continue his job and be productive as a florist well into the mild stage of Alzheimer’s disease dementia.
Alzheimer’s Disease Dementia in the Moderate to Severe Stages HOME ALONE One way to define the moderate stage of Alzheimer’s disease dementia is when the patient is no longer able to stay home alone for more than an hour or two. As discussed in more detail in Chapter 4, problems in the moderate stage of Alzheimer’s disease dementia include severe memory difficulties, poor problem-solving, wandering, and often the start of problems of incontinence and needing help with hygiene. Not surprisingly, patients in the moderate stage of Alzheimer’s disease begin to get into trouble when left alone. Even patients without incontinence who do not wander
239
may leave the stove on. And those who do not leave the stove on may fall prey to a telemarketer or accidentally lock themselves out of the house. We therefore strongly encourage families to have round-the-clock supervision available for patients in the moderate stage of dementia. Needing round-the-clock care is a huge task for the caregiver, and should not be done alone. Studies have shown that even caregivers who want to provide care themselves 24 hours a day/7 days a week invariably “burn out” faster than if they had shared the care of the patient. Other factors relating to family caregiver burnout include caregiver depression and patient delusions (Truzzi et al., 2012). Some families, particularly if large and/or close-knit, can do well sharing caregiving duties, giving the primary caregiver needed time alone. Note that if there are a number of different family members helping out, it is usually better for the patient if the family comes to the patient’s house, rather than the patient to the family’s house, although we have seen it work well both ways. Sooner or later, most families greatly benefit from additional help taking care of the patient. Home health aides, day programs, assisted living, and long-term care are some of the commonly used options. (See Chapter 22 for more on these important topics.) HOME HEALTH AIDES AND HOMEMAKERS Home health aides can provide assistance to caregivers by helping with activities of daily living such as showering, shaving, and brushing teeth. Homemakers do not provide personal care to the patient but help with laundry, cooking, light cleaning, and other tasks. In each case these individuals also provide much needed time for the caregiver to pay the bills, do household chores, go out with friends, or simply spend a few minutes by themselves. DAY PROGRAMS Day programs can provide much needed respite for the caregiver, and also a nice routine for the patient. Many of our patients truly look forward to the “bus” (really a van) that comes to take them to their “club” (really the day program). We recommend that patients go to the day program at least two days a week to allow them to develop a routine; three or four days a week
240
SECTION V Additional Issues
is probably ideal early on, and can be increased as the need arises and/or the caregiving duties become more difficult. Day programs provide appropriate activities for the patients, and some will also help with hygiene issues such as showering a patient when they are there. We also find that patients who attend day programs do better in the evening when they return home. ASSISTED LIVING FACILITIES Assisted living is ideal for patients who need more care than can be provided for them in their home for a number of reasons: • Patients may be living alone without family members in the area • The caregiver may not be able to provide adequate care because of their own medical problems • Family members may be busy with their own families or jobs and unable to provide care to the patient. Unlike long-term care services for those with more severe dementia, health insurance does not usually pay for assisted living, greatly reducing the numbers of individuals who would otherwise benefit from assisted living. Some states (e.g., Vermont), however, have now recognized that assisted living is a less expensive and more appropriate alternative to nursing home care (which is often paid for by state-funded Medicaid programs) for many patients and will contribute substantially to the cost. The local council on aging or similar agency can often facilitate this type of placement. There is a huge variety of services which assisted living facilities can provide, with some providing more services and some less. All will provide residents with their own room, as well as common areas for activities and dining. Most have additional services available, such as nurses to administer medications and aides to help with personal hygiene. Often these additional services are available “à la carte,” with additional cost for each additional service. Some assisted living residences are part of a larger facility that includes longterm care residences, whereas patients in other facilities will need to move to a different long-term care residence when the severity of their dementia is more than can be handled in assisted living.
LONG-TERM CARE FACILITIES When patients can no longer be managed at home or in assisted living, a long-term care facility is necessary. Ideally the move to long-term care should be done with a certain amount of planning. Unfortunately, patients frequently end up at a long-term care facility in a time of crisis, often after a medical illness. The typical scenario is that the patient is admitted to an acute care facility after a fall, urinary tract infection, pneumonia, or even dehydration, and it is determined that they are not safe to return home. In either situation, families should look for a facility that they are comfortable with and is close to home. Some facilities accept patients with a wide range of cognitive and physical impairments, whereas others specialize in one type or severity of impairment. If possible, we recommend considering a special unit that focuses on patients with Alzheimer’s disease and other types of dementia. These units are often inside a more general nursing home, consisting of a floor or a wing. These are often referred to as Alzheimer’s Special Care Units, Dementia Special Care Units, or Memory Care Units. In 2013, Alzheimer’s special care unit beds accounted for 72% of all special care unit beds and 4.5% of all nursing home beds (Alzheimer’s Association, 2014). Many states have legislation requiring such units to have special standards regarding the services provided, training of the staff, activities offered, ability of the staff to care for residents with behavioral and psychological symptoms of dementia, and also what fees they charge. See also Chapter 22 for additional discussion of these important issues. REFERENCES Alzheimer’s Association, 2014. Alzheimer’s disease facts and figures. Alzheimers Dement. 10, 1–75. Carmody, J., Potter, J., Lewis, K., et al., 2014. Development and pilot testing of a decision aid for drivers with dementia. BMC Med. Inform. Decis. Mak. 14, 19. Dubinsky, R.M., Stein, A.C., Lyons, K., 2000. Practice parameter: risk of driving and Alzheimer’s disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology 54, 2205–2211. Iverson, D.J., Gronseth, G.S., Reger, M.A., et al., 2010. Practice parameter update: evaluation and management of driving risk in dementia. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 74, 1316–1324.
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia Martin, R.C., Triebel, K.L., Kennedy, R.E., et al., 2013. Impaired financial abilities in Parkinson’s disease patients with mild cognitive impairment and dementia. Parkinsonism Relat. Disord. 19, 986–990. Triebel, K.L., Martin, R., Griffith, H.R., et al., 2009. Declining financial capacity in mild cognitive impairment: a 1-year longitudinal study. Neurology 73, 928–934.
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Truzzi, A., Valente, L., Ulstein, I., et al., 2012. Burnout in familial caregivers of patients with dementia. Rev. Bras. Psiquiatr. 34, 405–412. Wernham, M., Jarrett, P.G., Stewart, C., et al., 2014. Comparison of the SIMARD MD to clinical impression in assessing fitness to drive in patients with cognitive impairment. Can. Geriatr. J. 17, 63–69.
Chapter 25
Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
QUICK START: LIFE ADJUSTMENTS FOR MEMORY LOSS, ALZHEIMER’S DISEASE, AND DEMENTIA Issues in Mild Cognitive Impairment and Alzheimer’s Disease Dementia in the Very Mild and Mild Stages • Patients with mild cognitive impairment and very mild Alzheimer’s disease dementia may be able to drive: • A family member should ride in the passenger seat monthly while the patient is driving to help assure that the patient is driving safely • Driving should stop either when the patient reaches the mild stage of Alzheimer’s disease dementia or when the family member is uncomfortable riding in the car • When the patient does not want to stop driving, a formal driving evaluation is available at most rehabilitation hospitals. • Patients with mild cognitive impairment and Alzheimer’s disease dementia at any stage need to have their financial affairs supervised: • Family members or legal representatives should monitor all financial matters • The patient should be protected from telemarketers and other unscrupulous individuals soliciting monies and investment • Independent financial investing should cease immediately. • Patients with mild cognitive impairment and both very mild and mild Alzheimer’s disease dementia may be able to continue working • Working is healthy from the patient’s perspective • The patient will need to be in a supervised setting • The job should entail no risks or dangers to the patient as well as relevant co-workers, customers,
or consumers if problems in job performance were to occur. Issues in Alzheimer’s Disease Dementia in the Moderate and Severe Stages • In general, patients with moderate to severe Alzheimer’s disease dementia should not be left alone. • Home health aides and homemakers can provide assistance to patients and respite to caregivers: • Home health aides help with the patient’s personal needs, such as bathing • Homemakers help with household chores, such as cooking and laundry. • Day programs provide a healthy routine for the patient and respite for the caregiver: • Start at least two days per week; increase as needed • Call it a “club.” • Assisted living is ideal for patients who need more care than can be provided in the home when there is not a ready caregiver available. There are a large variety of assisted living facilities: • Some are almost independent living facilities, some are almost nursing homes, and some are in-between • Unfortunately, most insurance does not pay for assisted living facilities. • Long-term care is necessary for almost all patients with dementia at some point in their illness: • Encourage families to plan ahead • The family should look for a facility that they like and is close to home • Units that specialize in dementia care are ideal, if available.
See also Chapter 22 for additional discussion of many of these important topics.
236
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
Mild Cognitive Impairment and Alzheimer’s Disease Dementia in the Very Mild and Mild Stages
237
disease have motor vehicle accident rates similar to 16- to 19-year-old drivers. Since we allow 16- to 19-year-olds to drive, the conclusion was (and we agree) that it is reasonable for patients with very mild Alzheimer’s disease dementia to be allowed to drive as well (Dubinsky et al., 2000). (See Chapter 4 for details on distinguishing the very mild from the mild stage of Alzheimer’s disease dementia.) However, even if it is safe for patients with very mild Alzheimer’s disease to drive in general, how do we know if it is safe for the particular very mild patient sitting in our office to drive? In 2010 the American Academy of Neurology published an update to their practice parameter paper which helped to identify additional risk factors for unsafe driving (Iverson et al., 2010) (see Fig. 25-1).
DRIVING Driving is one of the most difficult issues that arises and will need to be addressed with almost every patient with dementia. How do we know if the patient in our office is safe to drive? Cognitive assessments have, unfortunately, been disappointing in their ability to identify which patients with cognitive impairment should and should not be driving (Wernham et al., 2014). In 2000 the American Academy of Neurology published a practice parameter paper based upon a meta-analysis of the available literature. The main finding was that patients with very mild Alzheimer’s
CDR 0.5 –1.0
CDR 2.0
Evaluate for risk factors Level B evidence
Level C evidence
Other
Risk factors Caregiver report of marginal or unsafe skills History of citations History of crashes Driving <60 miles/week Situational avoidance Aggression, impulsivity MMSE ≤ 24 Alcohol, medications, sleep disorders, visual impairment, motor impairment
Risk factors: None
Few
CDR 0.5 CDR 1.0 CDR 0.5 CDR 1.0
Several CDR 0.5
Relatively low risk Risk management • Encourage family support for alternate transportation • Strongly consider voluntary surrender of driving privileges • Consider DMV referral or professional driving evaluation, based on state guidelines
Multiple CDR 1.0
CDR 0.5
Relatively high risk Intervention pursuant to state guidelines
FIGURE 25-1 Possible algorithm for evaluating driving competence and risk management in patients with dementia. (From Iverson, D.J., Gronseth, G.S., Reger, M.A., et al., 2010. Practice parameter update: evaluation and management of driving risk in dementia. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 74, 1316–1324.)
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SECTION V Additional Issues
This updated practice parameter is helpful but, even if it is safe for the patient to drive today, what about next week or next month? If it is determined that the patient with very mild Alzheimer’s disease is safe to drive, we recommend that each month a family member ride as the front-seat passenger with the patient driving along his or her regular routes. For the most part, as long as the family member feels comfortable riding in the car with the patient driving, then we feel comfortable for the patient to continue driving. Driving should stop when either the family member no longer feels comfortable riding in the car, accidents or near accidents occur, or the patient progresses from the very mild to the mild stage of Alzheimer’s disease dementia. If there is a controversy between the patient and his or her family, we recommend a formal driving evaluation, which can be done at most rehabilitation hospitals. These evaluations are (unfortunately) unlikely to be covered by insurance, and cost several hundred dollars. But they are much less expensive than a single accident. Lastly, informational driving decision aids (short booklets) are being developed to help patients and families make good decisions around driving when cognitive impairment and very mild dementia are present; future studies will show whether these decision aids are beneficial (Carmody et al., 2014). PAYING BILLS, CREDIT AND ATM CARDS, AND INVESTING Having difficulties paying bills is often one of the first signs of memory loss. Some patients will forget to pay their bills, leading to loss of important services such as heat, electricity, and telephone. Other patients will pay bills twice. Some patients will have both problems. If a patient with mild cognitive impairment or very mild Alzheimer’s disease dementia is continuing to pay the household bills and do other banking duties, we recommend that their work be reviewed with a family member at least monthly to assure that no problems are developing. In our society it is easy to have rapid access to large amounts of money or purchasing power using automatic teller machines (ATMs) and/or credit cards. By the time the patient is in the mild stage of Alzheimer’s disease dementia it is usually prudent to remove access
to these cards. As described in Chapter 23, patients with ready access to cash can be easily exploited. Solicitations from unscrupulous individuals frequently appear in the mail and on the phone. We also know of several patients who, after their car was taken away to prevent them from unsafe driving, promptly went out and purchased another one, putting the down payment on their credit card! Even the most healthy and intelligent individual will sometimes make bad investments leading to significant financial losses. Investing is a complicated art, and depends upon being aware of the latest information along with good judgment and reasoning abilities (and of course a bit of luck). Given the complexity of investing, it is not surprising that many patients who eventually develop Alzheimer’s disease or another dementia will have made poor investments in the years prior to their diagnosis. The tragedy is that sometimes lifelong savings or retirement funds are lost within a short period of time. We recommend that a patient diagnosed with mild cognitive impairment or any type of dementia immediately relinquish any form of investing (Martin et al., 2013; Triebel et al., 2009). WORKING Should a patient with mild cognitive impairment work? As awareness of memory loss grows, and as more adults work into their 70s and 80s, there are more and more individuals who are working at the time of their diagnosis of mild cognitive impairment (and, more occasionally, very mild Alzheimer’s disease or other dementia). Whether individuals with mild cognitive impairment and very mild Alzheimer’s disease dementia should continue working depends upon the individual, their job, and how long they have been doing the work. If the individual has been doing the job for many years, it is likely that many of the manual and cognitive skills have already been consolidated in memory, and can therefore be maintained for a period of time (see Appendix C for more information on consolidation of memory). From the patient’s perspective, working is almost always a good thing: working typically provides a healthy routine, intellectual stimulation, socialization, and other helpful qualities such as maintaining feelings of self-worth and avoiding depression. From the
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia
employer’s and society’s perspective, it depends upon whether the patient’s cognitive impairment disrupts the performance of the job and/or whether there are risks or dangers involved. For example, an individual with mild cognitive impairment could continue to work on an assembly line in which their task is procedural in nature (not requiring memory, judgment, or reasoning), is relatively circumscribed, and the person at the next stage of the assembly line will be aware of any errors made. Another example of an appropriate job to continue includes making handmade crafts such as pottery or articles of clothing; again the work depends largely on procedural memory (not affected by mild Alzheimer’s disease dementia; see Appendix C), and the quality of the work will generally be readily apparent. Inappropriate jobs to continue include those that involve supervision at almost any level, from watching children at a daycare center to managing a business. Other inappropriate jobs to continue include those that involve memory, judgment, and reasoning that affect people’s lives at any level, such as a clinical or legal professional. Sales jobs may be appropriate if the work is circumscribed, the patient is already quite experienced, and the supervision of the patient is appropriate. For example, one of our patients was able to continue his job and be productive as a florist well into the mild stage of Alzheimer’s disease dementia.
Alzheimer’s Disease Dementia in the Moderate to Severe Stages HOME ALONE One way to define the moderate stage of Alzheimer’s disease dementia is when the patient is no longer able to stay home alone for more than an hour or two. As discussed in more detail in Chapter 4, problems in the moderate stage of Alzheimer’s disease dementia include severe memory difficulties, poor problem-solving, wandering, and often the start of problems of incontinence and needing help with hygiene. Not surprisingly, patients in the moderate stage of Alzheimer’s disease begin to get into trouble when left alone. Even patients without incontinence who do not wander
239
may leave the stove on. And those who do not leave the stove on may fall prey to a telemarketer or accidentally lock themselves out of the house. We therefore strongly encourage families to have round-the-clock supervision available for patients in the moderate stage of dementia. Needing round-the-clock care is a huge task for the caregiver, and should not be done alone. Studies have shown that even caregivers who want to provide care themselves 24 hours a day/7 days a week invariably “burn out” faster than if they had shared the care of the patient. Other factors relating to family caregiver burnout include caregiver depression and patient delusions (Truzzi et al., 2012). Some families, particularly if large and/or close-knit, can do well sharing caregiving duties, giving the primary caregiver needed time alone. Note that if there are a number of different family members helping out, it is usually better for the patient if the family comes to the patient’s house, rather than the patient to the family’s house, although we have seen it work well both ways. Sooner or later, most families greatly benefit from additional help taking care of the patient. Home health aides, day programs, assisted living, and long-term care are some of the commonly used options. (See Chapter 22 for more on these important topics.) HOME HEALTH AIDES AND HOMEMAKERS Home health aides can provide assistance to caregivers by helping with activities of daily living such as showering, shaving, and brushing teeth. Homemakers do not provide personal care to the patient but help with laundry, cooking, light cleaning, and other tasks. In each case these individuals also provide much needed time for the caregiver to pay the bills, do household chores, go out with friends, or simply spend a few minutes by themselves. DAY PROGRAMS Day programs can provide much needed respite for the caregiver, and also a nice routine for the patient. Many of our patients truly look forward to the “bus” (really a van) that comes to take them to their “club” (really the day program). We recommend that patients go to the day program at least two days a week to allow them to develop a routine; three or four days a week
240
SECTION V Additional Issues
is probably ideal early on, and can be increased as the need arises and/or the caregiving duties become more difficult. Day programs provide appropriate activities for the patients, and some will also help with hygiene issues such as showering a patient when they are there. We also find that patients who attend day programs do better in the evening when they return home. ASSISTED LIVING FACILITIES Assisted living is ideal for patients who need more care than can be provided for them in their home for a number of reasons: • Patients may be living alone without family members in the area • The caregiver may not be able to provide adequate care because of their own medical problems • Family members may be busy with their own families or jobs and unable to provide care to the patient. Unlike long-term care services for those with more severe dementia, health insurance does not usually pay for assisted living, greatly reducing the numbers of individuals who would otherwise benefit from assisted living. Some states (e.g., Vermont), however, have now recognized that assisted living is a less expensive and more appropriate alternative to nursing home care (which is often paid for by state-funded Medicaid programs) for many patients and will contribute substantially to the cost. The local council on aging or similar agency can often facilitate this type of placement. There is a huge variety of services which assisted living facilities can provide, with some providing more services and some less. All will provide residents with their own room, as well as common areas for activities and dining. Most have additional services available, such as nurses to administer medications and aides to help with personal hygiene. Often these additional services are available “à la carte,” with additional cost for each additional service. Some assisted living residences are part of a larger facility that includes longterm care residences, whereas patients in other facilities will need to move to a different long-term care residence when the severity of their dementia is more than can be handled in assisted living.
LONG-TERM CARE FACILITIES When patients can no longer be managed at home or in assisted living, a long-term care facility is necessary. Ideally the move to long-term care should be done with a certain amount of planning. Unfortunately, patients frequently end up at a long-term care facility in a time of crisis, often after a medical illness. The typical scenario is that the patient is admitted to an acute care facility after a fall, urinary tract infection, pneumonia, or even dehydration, and it is determined that they are not safe to return home. In either situation, families should look for a facility that they are comfortable with and is close to home. Some facilities accept patients with a wide range of cognitive and physical impairments, whereas others specialize in one type or severity of impairment. If possible, we recommend considering a special unit that focuses on patients with Alzheimer’s disease and other types of dementia. These units are often inside a more general nursing home, consisting of a floor or a wing. These are often referred to as Alzheimer’s Special Care Units, Dementia Special Care Units, or Memory Care Units. In 2013, Alzheimer’s special care unit beds accounted for 72% of all special care unit beds and 4.5% of all nursing home beds (Alzheimer’s Association, 2014). Many states have legislation requiring such units to have special standards regarding the services provided, training of the staff, activities offered, ability of the staff to care for residents with behavioral and psychological symptoms of dementia, and also what fees they charge. See also Chapter 22 for additional discussion of these important issues. REFERENCES Alzheimer’s Association, 2014. Alzheimer’s disease facts and figures. Alzheimers Dement. 10, 1–75. Carmody, J., Potter, J., Lewis, K., et al., 2014. Development and pilot testing of a decision aid for drivers with dementia. BMC Med. Inform. Decis. Mak. 14, 19. Dubinsky, R.M., Stein, A.C., Lyons, K., 2000. Practice parameter: risk of driving and Alzheimer’s disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology 54, 2205–2211. Iverson, D.J., Gronseth, G.S., Reger, M.A., et al., 2010. Practice parameter update: evaluation and management of driving risk in dementia. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 74, 1316–1324.
25 Life Adjustments for Memory Loss, Alzheimer’s Disease, and Dementia Martin, R.C., Triebel, K.L., Kennedy, R.E., et al., 2013. Impaired financial abilities in Parkinson’s disease patients with mild cognitive impairment and dementia. Parkinsonism Relat. Disord. 19, 986–990. Triebel, K.L., Martin, R., Griffith, H.R., et al., 2009. Declining financial capacity in mild cognitive impairment: a 1-year longitudinal study. Neurology 73, 928–934.
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Truzzi, A., Valente, L., Ulstein, I., et al., 2012. Burnout in familial caregivers of patients with dementia. Rev. Bras. Psiquiatr. 34, 405–412. Wernham, M., Jarrett, P.G., Stewart, C., et al., 2014. Comparison of the SIMARD MD to clinical impression in assessing fitness to drive in patients with cognitive impairment. Can. Geriatr. J. 17, 63–69.