Introduction to Dementia for Rehab Professionals

Dementia is a neurocognitive disorder (NCD) that affects millions of people in the United States (American Psychiatric Association [APA], 2013). By 2050, experts predict that close to 132 million people will be living with at least one type of dementia (Arvanitakis et al., 2019). Given its prevalence, healthcare practitioners must understand the basics of dementia for rehab professionals.

Despite the prevalence in society today, dementia is not a singular disease, rather a broad term to describe an array of symptoms that cause progressive decline in everyday activities. According to the Diagnostic and Statistical Manual of Mental Disorders, 5^th edition (DSM-5, 2013) NCDs can be classified as minor or major.

Major and minor neurocognitive disorders

The DSM-5 defines a minor NCD as having known cognitive deficits that are not attributed to other mental disorders (such as delirium or depression). However, these are not sufficient enough to impact independence in activities of daily living (ADL) or instrumental activities of daily living (IADL).

A major NCD is described as having substantial functional cognitive decline in at least one of the domains of cognition. These include:

Executive function

Complex attention

Language, learning, and memory

Perceptual-motor

Social cognition

Major NCD also is evidenced by a decrease in performance levels in daily tasks, which require progressive assistance. In the DSM-5, the term dementia was updated to be major NCD.

Rehabilitation and dementia for rehab professionals

The World Health Organization declared rehabilitation as essential to supporting people with dementia and their families. Due to the physical, cognitive, and emotional deficits associated with NCDs, an interprofessional team is necessary to holistically support the individual and their family. This can include rehabilitation professionals such as:

Occupational therapy practitioners

Physical therapy practitioners

Speech language pathologists

Neuropsychologists

When investigating cognitive decline, it is imperative to differentiate dementia from normal age-related brain changes and dementia-like symptoms. Other medical conditions such as hypothyroidism, depression, vitamin deficiencies, and normal pressure hydrocephalus often present dementia-like symptoms. These symptoms may range from decreased memory and/or confusion. However, unlike dementia, these symptoms are reversible.

Medical conditions like these, or other precipitating factors such as an infection (like a urinary tract infection or sepsis) can often present with a sudden onset of cognitive deficits. Inflammation in the body and disturbances in blood/oxygen flow to the brain generally cause this.

However, unlike dementia or major NCDs, the cognitive decline associated with delirium is short-term and reversible. For example, when due to an infection such as a UTI, once antibiotics are treated and the infection is resolved, the cognitive deficits resolve usually pretty quickly.

Evaluating dementia for rehabilitation professionals

A conventional clinical pathway for medical and rehabilitation professionals to evaluate for dementia can include:

Observe for signs and symptoms of dementia

Rule out delirium and depression

Look for other medical problems

Assess cognitive symptoms

Assess non-cognitive (behavioral) and psychological symptoms

Rule out other mental health or substance use disorders

Assess care arrangements and needs of caregivers

Measuring rehabilitation outcomes

Common outcome measures that can be used by rehabilitation professionals to investigate changes in cognition include:

Short Test of Mental Status (STMS)

The Memory Impairment Screen (MIS)

Montreal Cognitive Assessment (MoCA)

Mini-Mental State Examination (MMSE)

Short Blessed Test

Saint Louis University Mental Status (SLUM) examination

Allen Cognitive Level (ACL) Screen

Cognitive Assessment of Minnesota

Results from these measures might inform further cognitive testing. It may also include performance-based measures to determine the impact on daily performance. A prominent difference between mild and major NCD is the level of decline in functional cognition and impact on performance in daily activities. During a formal diagnostic assessment, a person with mild NCD would score one to two standard deviations below the norm. Major NCD would score two or more standard deviations below the norm.

Alzheimer’s Disease and occupational therapy

When most people think of dementia, Alzheimer’s disease comes to mind. Alzheimer’s disease is the most frequent cause of dementia (accounting for 60-80% of all cases). Yet not all dementias are Alzheimer’s disease.

According to the National Institute on Aging, various types of dementia include:

Frontotemporal dementia

Lewy Body dementia

Vascular Dementia

Other progressive medical conditions can portray dementia-like symptoms like:

Parkinson’s Disease Dementia

Huntington’s Disease dementia

Korsakoff Syndrome

Normal Pressure Hydrocephalous

Alzheimer’s is a major degenerative brain disease caused by complex brain changes following cell damage. It leads to dementia symptoms that slowly worsen over time. The Alzheimer’s Association describes the progression of Alzheimer’s dementia by three stages: early or mild, middle or moderate, and late or severe

In early stages of Alzheimer’s, a person can still function independently. However, they may begin to show some decline noticed by close friends or family. They may have trouble finding words, misplace objects, struggle with executive functioning, get lost during normal routes, etc.

The middle or moderate stages of Alzheimer’s occur when the person begins to have more difficulty with daily tasks. At this point, they may need greater assistance. They may experience confusion, forgetfulness, have changes in mood or behavior, and have changes in sleep patterns.

In late-stage Alzheimer’s disease, a person requires 24/7 assistance with all areas of daily activities. Eventually, they lose the ability to walk, talk, and even swallow.

Dementia care practice recommendations

In 2018, the Alzheimer’s Association published Dementia Care Practice Recommendations constructed on a review of the evidence for best practice and quality of care. These recommendations include:

Person-centered care

Early detection and diagnosis

Assessment and care planning

Medical management

Care partner information, education, and support

Management of behavioral and psychological symptoms and activities of daily living

Appropriate staff ratios and training in care facilities

Creation of dignified and therapeutic environments

Service coordination and ease with transitions throughout the continuum of care

Rehabilitation professionals can and should be integrated throughout these recommendations. They can holistically support persons with dementia and their families to achieve the highest quality of life outcomes (Faieta et al. 2023).

In early stages of dementia, rehab professionals can implement compensatory training to help a person maintain independence. They may use schedules, environmental modifications such as the use of labels and signage, training on apps on via smart devices and other memory aids.

In middle to late stages of dementia, rehabilitation can provide more direct family and caregiver training on how to incorporate verbal and visual cuing, provide partial or full assistance to daily tasks including safe functional transfers and proper positioning to prevent joint contractures and skin breakdown.

Reducing caregiver burden and burnout

Family members care for the majority of individuals with dementia. To reduce caregiver burnout, the World Health Organization recommends an emphasis on caregiver support. Caregiver burden is a phenomenon that describes the demands of being a caregiver. It can have physical, emotional and financial stressors to the caregiver and impact their care. Because of this, rehabilitation professionals must have a family-centered approach to service delivery.

References

Arvanitakis, Z., Shah, R. C., & Bennett, D. A. (2019). Diagnosis and management of dementia: Review. JAMA, 322(16), 1589–1599. https://doi.org/10.1001/jama.2019.4782

Cheng S. T. (2017). Dementia caregiver burden: A research update and critical analysis. Current psychiatry reports, 19(9), 64. https://doi.org/10.1007/s11920-017-0818-2.

Clare L. Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med. 2017 Mar 7;14(3):e1002245. doi: 10.1371/journal.pmed.1002245. PMID: 28267744; PMCID: PMC5340348.

Faieta, J., Ebuenyi, I.D., Devos, H., Reynold, C.F., & Rodakowski, J., (2023). The role of rehabilitation for early-stage Alzheimer’s Disease and related dementias: Practice and priorities. Archives of Physical Medicine Rehabilitation, 2023. ISSN 0003-9993, https://doi.org/10.1016/j.apmr.2023.09.013

Ravn, M. B., Petersen, K. S., & Thuesen, J. (2019). Rehabilitation for People Living with Dementia: A Scoping Review of Processes and Outcomes. Journal of aging research, 2019, 4141050. https://doi.org/10.1155/2019/4141050

Shaji, K.S., Sivakumar, P.T., Rao, G.P., & Paul, N. (2018). Clinical practice guidelines for management of dementia. Indian J Psychiatry. 60(Suppl 3):S312-S328. doi: 10.4103/0019-5545.224472. PMID: 29535467; PMCID: PMC5840907.