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There is more than one type of dementia, including frontotemporal lobar degeneration,

vascular dementia, Lewy body dementia, and Parkinsonian dementia. Worldwide, nearly 44

million people have Alzheimer’s or a related dementia.

Alzheimer’s is the most common type of dementia. Between 60%-80% of dementia cases fall

under this category. Residents with dementia or brain injury often experience a

deterioration of cognitive function. These impairments adversely affect residents’ receptive

and expressive communication abilities. Receptive communication is the ability to decode

and understand information, such as following verbal instructions. Expressive

communication is the ability put thoughts into words and sentences, in a way that makes

sense and is grammatically accurate. This deterioration in ability to communicate can make

engaging residents with dementia difficult for caregivers and often devastating for loved

ones.

The effects of brain injuries make it difficult for caregivers to provide the necessary care to

residents. There are many strategies that tailor communication to each resident’s abilities.

For example, a resident may have difficulty creating a logical flow of ideas and expressing

themselves clearly. They might struggle to follow simple verbal instructions.

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People with memory impairments live in various types of residential facilities: long term

care facilities (LTC), assisted living facilities (ALF), and skilled nursing facilities (SNF).

There are millions of people who transition from hospitals to acute care settings annually.

Caregivers in every type of facility both receive and initiate resident care.

Studies show that caregivers cite inadequacies of hospital discharge information, such as

residents’ psychological/functional history and medication orders, as well as information of

current health status, which can result in gaps in communication. Poor communication

leads to family/caretaker stress, care delays, and increased risk of patient

rehospitalization. The resulting rehospitalization effect of a resident having to move from

facility to hospital and then back has a negative impact on the overall health of the

resident, both mentally and physically.

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Memory impairment includes difficulties communicating about daily experiences, which

can lead to withdrawal, social isolation, and poor care quality, , which in turn leads to poor

quality of life. Residents with dementia or Alzheimer’s depend on caregivers to establish

and maintain relationships with those around them. To create caring relationships, it is

important that caregivers can communicate with residents with Alzheimer’s verbally and

nonverbally. With verbal communication, caregivers must assess a resident’s ability to

express ideas. When talking to a resident, “identify key concepts and word associations in

the conversation and ask for feedback.” 3 For example, if the resident struggles to find a

word and then verbalizes a word that is close, the caregiver should state the intended word

and look for agreement from the resident. Always try to “assist” the resident in succeeding,

rather than attempting to have a “quiz.”

Speak slowly, use simple language and make sure you are at eye level when speaking to

residents. “Be patient, as residents may feel frustrated as they struggle to communicate.”3

They may feel frightened; have anxiety, which can cause more confusion; experience

language decline, and have behavioral outbursts, both physically and verbally. Remain

calm and reassuring while explaining what you plan to do. Remember, these residents were

once successful, thriving people in the community. To now not be able to express

themselves is extremely frustrating!

Residents may avoid verbalization altogether. According to best practices identified by the

John A. Hartford Institute for Geriatric Nursing and the Alzheimer’s Association, caregivers

must be able to interpret and respond to the meaning of non-verbal behaviors, such as

agitation, restlessness, and aggression. “These behaviors are often an expression of unmet

needs: pain, hunger, and/or toileting needs,”3 as well as fearfulness and frustration.

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Alzheimer’s is generally diagnosed in individuals 65 years of age and older. However, 5% of

cases occur in individuals younger than 65. Frontotemporal lobar degeneration is the most

common type of early-onset dementia. The diagnosis can be devastating for family

members who may now have to take on the role of caregiver for a young parent or sibling.

Caregivers must understand the special circumstances of early-onset Alzheimer's in order to

provide quality care to residents. There are two types of early-onset Alzheimer’s: genetic,

which is extremely rare, and dementia, the more common type. Signs and symptoms of

early-onset Alzheimer’s appear between the ages of 30 to 65, and are similar to those seen

in other forms of the disease. Early symptoms include forgetfulness and difficulty with

conversations and concentrating. Late symptoms include severe mood swings, severe

memory loss, and incapacity for self-care. Other signs are loss of language skills and gait

changes.

With early-onset Alzheimer’s, it’s likely that family members will take on the caregiver

role. Assess their coping strategies and educate them about available options for care, such

as support groups. Additionally, it is important to educate the family about how to deal

with the difficult behaviors that early-onset Alzheimer’s poses. Caregivers must be

prepared for paranoia, hallucinations, anger, and resistance to care. With proper

education, the quality of life for both residents and caregivers will improve. Family

members often become the least effective caregivers due to emotional distress and their

own anger, so it is essential that they receive the proper guidance and education to enable

them to cope with the situation.

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Complete and accurate written documentation is necessary to validate that residents

receive the appropriate care. Documentation supports the exchange of information with

other staff members. Take information and input on residents from all sources.

Caregivers often obtain assessment information from loved ones who are familiar with

residents’ communication abilities and can assist in interpreting residents’ communication

styles. According to Miller (2008), an effective way to assess a resident’s ability to

understand verbal instructions is to “ask family members or other caregivers if a resident

understands certain words, and identify any specific expressions that they use in caring for

the resident.” The more information obtained, the better.

Miller also suggests that to assess a resident’s nonverbal communication, “ask family

members or other caregivers about particular physical cues that the patient associates with

daily activities. For example, ask if a resident will get dressed more easily if clothing is set

out on a chair.” Another strategy is to ask family members if the patient is more receptive

to taking medications at a particular time of day.

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There are many sources in print and on the internet of educational materials for both

residents coping with memory impairment and their family members. The Alzheimer’s

Association provides a nine-question guideline to help family members and caregivers

communicate with residents.

There are also online resources to help with assessing communication difficulties in adults

with memory impairment. It’s advisable that each organization have its own assessment

tool to use during the assessment phase. This information can be used by caregivers in

terms of communication. Additional online resources include the Alzheimer’s Association

Virtual Library, Alzheimer’s Navigator, and the John A. Hartford Foundation. These sites

provide information on healthcare, housing, and communication techniques for people with

dementia or Alzheimer’s.

When documenting, it is crucial to include known characteristics, including the resident’s

likes, dislikes, preexisting personality, and behavior in current care. This written

information enables caregivers to tailor their support to a resident’s specific needs.

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When dealing with residents with memory impairments, caregivers should be aware of key

points in the timing of communication. Caregivers are responsible for complete and

accurate communication of a resident’s mobility status, communication abilities,

medication regimens, etc., during any transition of care.

For instance, caregivers play a key role for more than “5 million patients who transition

from hospitals annually.” Use of an electronic health record (EHR) offers several advantages

to an organization. The EHR ensures accuracy and timeliness of information sharing, as well

as convenience.

Examples of inadequate medical information include inaccurate reports, especially

medication lists. To improve transitions, studies suggest that hospitals need to

communicate medical information at least 24 hours prior to admission. Caregivers should

also have access to a prescribing provider with up-to-date knowledge of the patient. These

improvements will ensure that special requirements and medications are readily available

to residents.

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One of the most challenging aspects of working with residents who have memory

impairments is monitoring and dispensing medication. In transitions of care, any issue with

a resident’s medication regimen (delay, lack of supply, incorrect dose, etc.) can result in an

adverse event affecting the emotional and physical safety of residents.

Another common challenge during transitions of care identified by researchers is conflicting

medication orders upon patient arrival. Discharge orders prior to admission may fail to

communicate changes in medication, resulting in a drug not being readily available at on-

site pharmacies. “These medication errors can lead to rehospitalization of residents and the

dissatisfaction of their family members.”

Communication between medical staff is a challenge, as well. It is essential that the entire

medical team be aware of the medication prescribed by each specialty and cognizant of all

possible drug interactions.

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It is important to recognize that residents who have difficulty communicating may feel

frustrated. The caregiver should acknowledge the resident’s feelings and offer support and

understanding, as well as enough time to answer any questions. The caregiver should allow

residents to guide the conversation, never interrupting them or changing the topic.

Studies show that residents with dementia or Alzheimer’s will engage more in conversations

when they feel the caregiver is listening attentively to their expressed reality. A deep,

mutual rapport is valuable when assessing a resident’s specific needs. Caregivers must

strive to build trust with residents. What may sound like babble to the caregiver may be an

attempt by the resident to communicate.

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There are many methods to improve care and keep the level of healthcare costs down for

residents with dementia. The Montessori Method is most closely associated with early

childhood learning. It has been adapted to engage residents with Alzheimer’s and dementia

and can be implemented in clinic and acute care settings.

Montessori activities are adapted to meet the level of the individual learner and build self-

esteem. The method also provides choices in the selection of activities and develops a

sense of satisfaction for work well done. The most important aspect of the Montessori

Method is that it focuses on the process of the activity rather than the final product.

Specifically, the Montessori Method helps engage adults with dementia by stimulating the

mind with activities that use fine motor skills. It includes “the use of shapes, cards, and

objects to help develop the manual dexterity needed in daily life, like zipping clothes and

holding small objects.” Encourage residents to partake in activities of repetitive motion.

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The Gentle Persuasive Approaches in Dementia Care (GPA) is a person-centered approach to

supporting residents with dementia or Alzheimer’s. This is a particularly effective method

for engaging residents with aggressive behaviors, such as shouting, outbursts, or resistance.

The acute care environment can be perceived by residents as unfamiliar and threatening,

which may lead them to resist caregiver support. GPA is a standardized curriculum that

helps caregivers interpret and reframe resident behavior often viewed as aggressive to,

instead, as self-protective and related to unmet needs.

The GPA includes information on the impact of dementia on the brain, communication

strategies, and respectful yet self-protective physical techniques to respond to residents’

potentially injurious behaviors. A study that examined the effectiveness of GPA showed that

incidents of aggressive behavior declined by 50% three months after GPA training was

implemented.

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Living with dementia disorders can make communicating in daily life difficult. Affected

individuals are likely to withdraw and become isolated, which leads to decreased

psychosocial well-being and, in turn, a decline in cognition. Simple, direct exchanges

facilitate better communication.

The validation method is designed to facilitate communication with people who have

dementia by accepting residents’ experiences of reality and responding to their verbal and

non-verbal expressions. This method stresses the importance of understanding the meaning

behind communication in one-to-one conversations. One recommended strategy is for

caregivers to look for word associations.

When using the validation method, it is also important to not interrupt residents who have

dementia so that they may speak more freely. Caregivers should not try to change the

conversation to something cheerful. Instead, let residents discuss their feelings and

disappointments. This strategy is especially useful for persons around the age of 80 who

have dementia but not a history of psychiatric illness. Let the resident finish his or her full

expression; do not try to correct the resident, even if you feel that he or she is in error.

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When caring for a resident with memory impairments, there are times when disruptions of

necessary care occur. Alzheimer’s and dementia sometimes make it difficult for residents

to recognize their surroundings. If they feel threatened, anxious or frustrated, residents

may exhibit behaviors like shouting, pacing, wandering, and resistance to care. There is a

reason behind these behaviors, and usually it is an unmet need that is difficult to

communicate.

For older individuals living with dementia, resistance to care is common. Caregivers often

resort to elderspeak in daily conversations with older adults with dementia. Elderspeak is

infantilizing communication, similar to the language people use when talking to young

children. Features of elderspeak include using diminutives and inappropriate intimate

names such as, “honey” and “good girl,” and using shorter sentences. Elderspeak implies a

stereotypical view of elders being less competent than younger adults. The stereotypical,

implied message prompts negative self-esteem and withdrawal for an older person. Elders

must be treated with dignity and respect, regardless of their cognitive level or diagnosis.

Research has shown that cognitively intact older adults have a negative view toward

elderspeak. Elders with dementia are more likely to resist care when caregivers use

infantilizing communication. Caregivers should talk to residents who have dementia with

the same respect they would give to anyone and would want for themselves. This will help

prevent or decrease the risk of resistance to care. With appropriate education, caregivers

will be better prepared to respond effectively while showing respect to residents exhibiting

these behaviors. The caregiver must look for non-verbal cues, such as a resident indicating

he or she needs to use the bathroom or making facial expressions, such as grimacing.

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As the prevalence of Alzheimer’s increases, so does the burden on caregivers. Individuals

living with Alzheimer’s are likely to wander away from home and away from or within a

facility. The use of GPS technology placed in shoes provides a way to monitor the

movements of individuals with memory impairments. This technology can decrease threats

to the safety of these individuals and ease the anxiety of caregivers.

The GPS shoe is inexpensive and allows those with memory impairment to maintain their

independence, while allowing for easy tracking. The GPS has been found to be extremely

accurate, and can be integrated with a phone app or call center.

Though the GPS shoe is a helpful solution to concerned caregivers, its use raises some

ethical and legal concerns. The ethical debate focuses on the relationship between safety

and autonomy. Some believe it is unethical to track individuals and curb their freedom.

However, family caregivers tend to prioritize their loved one’s safety over all other values.

When considering the use of this technology, it should be done on an individual basis and

weigh any concerns with the best interests of the resident. In addition, it is neither

advisable nor a best practice to allow someone who has dementia to wander away without

supervision, even with a GPS shoe.

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In care facilities, there are many ethical dilemmas that exist for caregivers of residents who

have memory impairments associated with dementia. The most significant ethical issues are

decision-making in end-of-life care, use of restraints on residents, and a lack of resources.

Decisions about palliative care, identifying decision-makers, nutrition, and covert

medication (mixing medication in food without informing the resident) can be a struggle for

caregivers and families. All documentation should be up to date, including advance

directives, living wills, power of attorney paperwork and communication with everyone who

needs to be involved. Families will turn to caregivers for direction, reassurance and

support. They need permission to say good bye to their loved one and to give the resident

permission to pass.

There is a demand for a framework of ethics in care facilities, including daily discussions

with staff and inclusion of managers and policy makers when lack of resources is discussed.

The current best practice is for residents to have neither physical nor chemical restraints.

This is a challenge if there is a shortage of staff to manage these residents.

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Medical negligence litigation has become an issue of worldwide concern. Senior managers

are responsible for supervising, planning, developing and monitoring standards of care that

include safe care for residents. It is important to include knowledge of legal risks and the

necessity for documentation of patient status, especially any changes in status.

Negligence has become practically synonymous with medical malpractice because of the

number of malpractice suits in the United States. Caregivers must know how to practice

safely and lawfully. Always monitor for and report deterioration, administer medications

appropriately, and know and follow polices. A rule of thumb is that if it is not documented,

it never happened, which leads to claims being litigated or settled.

Negligence cases are divided into three categories: minor, ordinary, and gross negligence. A

charge of negligence can arise from almost any action that damages a resident’s health, so

caregivers need to document everything thoroughly and be familiar with the legal aspects

of the healthcare industry. Any change in the status of a resident must be documented.

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Negligence is commonly related to elopements. It is necessary to have a protocol in place

in the event that a resident is not located during routine rounds. One typical case occurred

just days after the caregiver had been trained on the routine rounding procedure. The

employee assumed that the patient would be found in the building and delayed reporting

the incident, which took away time from the search. The patient had eloped and was found

dead a month later.

The court found that the caregiver failed to communicate effectively with staff to promptly

inform them of the missing resident, which caused a delay to implement interventions in a

timely manner. These actions violated the duty of care, and this medical negligence caused

the patient’s death.

The findings from this case study can help caregivers understand their legal responsibilities

and motivate them to reduce the risk of medical negligence. Factual case studies should be

shared with staff to exemplify the risk and possible outcomes that can result when

institutional policies and procedures are not followed. The employee in this case study was

terminated. Not only can negligence be an issue, but some actions may bring rise to

criminal charges of criminal negligence.

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One study used text analysis to demonstrate that, “Clinical practice guidelines (CPGs) are

meant to improve standards of clinical competence and professionalism by referencing

evidence-based information on beneficial healthcare practice. However, CPGs at large fail

to address ethical issues in medical practice, particularly in dementia care.”

Twelve national clinical practice guidelines on dementia were examined to assess their

ethical content. In the study, thirty-one ethical issues in dementia care were identified by

the systematic review. Ethical issues examined included responsible surrogate decision

making, as well as the abuse and neglect of residents.

The researchers concluded that “ethical issues were inconsistently addressed in national

dementia guidelines.” They also concluded that “clinical practice guidelines should

develop a stronger framework for ethical consideration, in order to improve the quality of

care for residents with dementia.”

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This case study adds to an understanding of how litigation might be decreased by

administrators who create a proactive rather than reactive position for the legal

environment in their facilities. According to research, “Florida’s nursing homes are

experiencing an increase in litigation costs” and this provides an insight into the litigation

culture within the rest of the country. In addition, “Florida spends more money on nursing

home regulation than on all other types of health care facilities combined.”

Researchers proposed that increased oversight from outside agencies shed light on deeper,

systemic problems in Florida nursing homes, and this has led to more legal cases. In

addition, the passage of the Resident Bill of Rights in Florida (Florida Statutes §400.022–

400.023) may have contributed to the culture of litigation. This is a trend that will follow in

more states.

One study demonstrated that in medium- and high-risk facilities, staff viewed litigation as a

current challenge, unlike in low-risk facilities. In the low-risk facilities, the entire clinical

staff knew about the Resident Bill of Rights. Conversely, in the high-risk facilities, only 84%

of the clinical staff were familiar with the Resident Bill of Rights, and 71% of the medium-

risk facility expressed familiarity.

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Florida’s nursing home industry has experienced an active litigious environment for the past

decade. This environment drives quality care. There is a delicate balance between the

costs of care to avoid malpractice and the ability to run a profitable long-term care

business. Lawsuits can threaten the financial stability of an organization. However, that

same threat drives the need to provide quality care, which helps to prevent lawsuits.

Zhao and colleagues concluded that “the threat of nursing home litigation may create an

incentive for nursing homes to improve quality of care. Large paid claims also harm nursing

homes’ financial viability, undermining the quality of care.”

The study concludes with practice implications, which were “to identify all costs associated

with the delivery of care…assess malpractice litigation risk…identify tactics to mitigate

these risks...”

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Caregivers need to understand the disease progression of Alzheimer’s in order to inform

legal/medical decisions made by residents. Alzheimer’s is a neurodegenerative disease.

One research study looked at how dysgraphia (deterioration in writing ability) highlights a

specific deficit in Alzheimer’s patients and may identify other types of cognitive

deterioration. The study tested a patient’s cognition by observing letter-writing over a

period of 19 days and then again after 6 months. The findings showed a strong relationship

between dysgraphia and other measures of cognitive performance.

Legal capacity, according to the study, can be determined by residents’ ability to write

their thoughts coherently, even if they are unable to communicate that same thought

verbally.

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