Dementia and Occupational Therapy Guide

This article will introduce you to the many ways occupational therapy can help people living with dementia. 

No matter what stage of dementia you—or your family member—are in, there are things you can do to improve your quality of life. And, occupational therapy professionals are trained to come alongside you and help you make a plan that is right for you and your family.

What is dementia?

Dementia is the progressive loss of cognitive functions such as memory, safety awareness, reasoning, and judgment.

Dementia can be caused by many different conditions or diseases. Some of the most common types of dementia are Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. Some people may have more than one type of dementia, a condition known as mixed dementia. We’ll discuss considerations for OT and different types of dementia below.

Who are care partners?

When we discuss OT and dementia, we have to emphasize two things:

1. OT professionals work with people living with dementia AND their care partners.

2. “Care partners” is a newer term for “caregivers.” We typically refer to care partners as being either “informal” or “formal.”

Examples of Informal Care Partners:

• Family members (e.g., spouses, partners, children, or siblings)

• Friends

• Neighbors

Examples of Formal Care Partners:

• Non-medical home care

• Staff in skilled nursing facilities, assisted living facilities, or memory care communities

• Adult day program staff

• Home healthcare professionals

How can OT help someone living with dementia?

Occupational therapy (OT) plays a crucial role in helping people living with dementia (PLWD) to maintain or enhance their:

• participation in daily activities,

• safety, and

• quality of life.

Occupational therapy practitioners also play an important role in supporting care partners of PLWD.

We collaborate with care partners of PLWD by: 

• providing education and training to adapt tasks,

• adjusting care partner communication,

• modifying environments, and

• maximizing meaningful activity participation.

Part of our goal in these collaborations is to reduce dementia-related behaviors, decrease care partner burden, and improve safety and quality of life for people living with dementia.

When we work with PLWD, we use a habilitative approach.

Habilitation focuses on promoting a client’s current participation, function, and/or performance. This is achieved by enhancing an individual’s preserved capabilities. OTs who take a habilitative approach focus on the dyad, or team, which includes both the PLWD and their care partners.

By contrast, a rehabilitative approach focuses on restoring lost function and typically only addresses the “patient,” which often is not appropriate for dementia care.

How to find an OT who works with dementia

When searching for an OT professional who has experience working with PLWD, it’s important to verify the following prior to starting care. You can usually find this information on a company’s website, but if not, you can call the company to ask.

Questions to ask when seeking an OT professional can include: 

1. Do they have experience working with PLWD?

2. Do they focus on the care partner as well as the patient?

3. Has the professional taken additional courses or certifications specific to dementia?

Here are some websites that may help you in your search: 

• Dementia Society of America’s provider database

• Skills2Care Certified OT professional search

You can also search within the OT Directory to find OT professionals who have tagged dementia care as a focus area. 

Common OT screens and assessments for people living with dementia

The occupational therapist will conduct an initial evaluation to assess the individual’s strengths and limitations in daily tasks, which helps identify areas requiring assistance or support.

Through the use of standardized assessments and clinical observations, the OT will gain insight into the individual’s level of cognition, physical abilities, and environmental factors that may contribute to their functional impairments. They will also ask the care partner questions to identify their priorities and concerns.

This information will guide the development of an individualized plan of care. Here are some examples of the screens or assessments that occupational therapists may administer during their sessions.

You can find links to all of our assessments on our OT Assessment Guide. 

Cognitive Screens/Assessments:

• Large Allen Cognitive Level Screen - 5 (LACLS-5) & Allen’s Diagnostic Module -2 (ADM-2)

• Routine Task Inventory - Expanded (RTI-E)

• Saint Louis University Mental Status exam (SLUMS)

• Mini-Mental State Examination (MMSE)

• Montreal Cognitive Assessment (MoCA)

• Brief Cognitive Rating Scale (BCRS) & Functional Assessment Staging (FAST)

Depression Screens:

• Patient Health Questionnaire (PHQ-9)

• Geriatric Depression Screen

Pain:

• Pain Assessment in Advanced Dementia Scale (PAINAD)

Quality of Life:

• Quality of Life in Alzheimer’s Disease (QoL-AD)

Behavior:

• Skills2Care® Caregiver Assessment of Management Problems (CAMP)

• Neuropsychiatric Inventory Questionnaire (NPIQ)

Social Behavior/Comportment:

• Comportment Scale

Care Partner:

• Perceived Change Scale (PCS)

• Modified Caregiver Strain Index (MCSI)

• Zarit Burden Interview

• Functional Capacity Card Sort (FCCS)

Home Safety:

• Home Environmental Assessment Protocol (HEAP)

OT treatments for someone living with dementia

Below are common OT treatments for people living with dementia. I’ll give examples of each intervention.

Care partner education and training

Care partner involvement is a critical element of occupational therapy intervention for those living with dementia. Individuals living with dementia likely will be unable to independently initiate or use strategies that are recommended to them during sessions; therefore, it’s important that the care partner is an active participant in the sessions and that they are able and willing to implement the recommended strategies.

Example:

A woman living with dementia becomes agitated when her husband tries to help her dress in the morning, stating, “I know how to get dressed!” She is often found wearing multiple layers of clothing.

Environmental Modification

Environmental modifications can reduce dementia-related behaviors, increase participation in an occupation, and improve client safety. These changes can be small and inexpensive, although some modifications may be more substantial.

Example: 

We may place curtains over sections of the individual’s closet to prevent her from engaging with multiple outfits.

Task Adaptation

This involves making changes to the way tasks or activities are set up—or to the items used during a task.

Example:

If the client typically dresses in the bathroom, ask her husband to place an outfit in the bathroom the night before.

Adjusting Communication

This includes modifying the words that care partners say to the PLWD, while also considering tone of voice and body language.

Example: 

Encourage the husband to avoid saying, “You need to get dressed.” This might be triggering the client’s agitation, and the phrasing might be too abstract. Instead, ask the husband to hand the client one item of clothing at a time or to try using simpler, clearer instructions such as, “Put the sock on your foot.”

Promoting Activity Participation

There is a wealth of research that shows the benefits of improving activity participation for PLWD. Engaging in meaningful activities can reduce dementia-related behaviors and improve quality of life for both the PLWD and their care partner. These activities may include sensory stimulation, physical activity, cognitively stimulating activities, leisure activities, or social engagement.

Example:

Consider asking the husband to play calming or relaxing music before, during, or after the dressing task to reduce agitation.

Evidence-based intervention programs:

As occupational therapists, we always strive to follow the best available evidence. This can mean using individual interventions that have a strong research base behind them. But, there are also entire programs that have been well researched. These include:

• Skills₂Care^® 

  • Skills₂Care^® is an evidence-based intervention that has been developed in collaboration with people living with dementia, their families, and OT professionals. Skills₂Care^® aims to improve the communication, interaction, and engagement of people living with dementia through care partner involvement. The program includes the development of personalized action plans, education for care partners, and the implementation of a “taking care of self” protocol for care partners. Studies have shown that Skills₂Care^® can reduce dementia-related behavior, enhance participation, and reduce care partner burden.

• Care of Older Persons in the Environment (COPE)

  • People living with dementia often have difficulty performing daily activities such as bathing, dressing, and meal preparation. COPE is a program that focuses on the modification of the environment to improve the performance of daily activities. COPE incorporates home visits by OT professionals, identification of environmental barriers, development of a personalized plan, and installation of adaptive equipment. Studies have shown that COPE improves the performance of daily activities and reduces caregiver burden.

• Tailored Activity Program (TAP)

  • The tailored activity program (TAP) is an individualized approach to promoting engagement in meaningful activities for people with dementia. TAP involves the identification of a person’s interests, abilities, and preferences, and the development of a personalized activity plan. This program includes both cognitive and physical activities and can be done in groups or individually. Research has shown that TAP improves quality of life and reduces behavioral symptoms in people with dementia.

Other dementia care programs can be found here.

Considerations for OT and different types of Dementia

While dementia manifests differently in each client, there are some defining characteristics for various types of dementia that require special consideration. Of course, occupational therapy practitioners will maintain a client-centered approach regardless of diagnosis.

• Alzheimer’s disease (AD)

  • Typically progresses as slow gradual decline.

  • Most educational resources available to the public are geared toward AD.

    • Early onset AD:

      • Alzheimer’s disease onset before age 65; clients are typically in their 40s and 50s.

      • Most clients do not have physical impairment.

      • Younger clients may still be working, raising children, etc.

      • Care partners may be especially overwhelmed financially and emotionally.

        • We often hear things like “we had plans for our retirement that will never happen,” which illustrates the many aspects of grief that care partners are experiencing.

      • These clients may not feel as though they “fit in” at local adult day programs, memory care communities, etc. This requires a creative approach to support care partners with respite while maintaining client dignity.

• Vascular dementia

  • Onset may be gradual or may appear as a sharp decline in cognition and functioning following a stroke, though not all cases of vascular dementia are caused by strokes.

• Dementia with Lewy bodies (DLB)

  • Typically presents as cognitive symptoms first with increased motor symptoms as the disease progresses. These motor symptoms will present similar to Parkinson’s disease (e.g., shuffling gait or decreased amplitude of movement).

  • These clients commonly present with fluctuating functional cognition. This can be particularly challenging for care partners, because a strategy that is effective for them one day (or one hour) may not be as effective the next day or even later the same day.

• Frontotemporal dementia (FTD)

  • Often involves an earlier onset, with more than half of those with FTD displaying symptoms prior to age 65.

  • Many of the considerations for FTD are similar to those for early onset AD.

  • Impulsivity is often a big concern. This may include gambling, shopping, being scammed via phone and email, leaving the home unexpectedly, etc.

• Parkinson’s disease (PD) dementia

  • Typically presents as motor symptoms first with cognitive symptoms appearing later in the disease progression.

  • Similar to DLB, fluctuating functional cognition can be challenging for care partners to manage.

• Posterior cortical atrophy (PCA)

  • Sometimes classified as a subtype of Alzheimer’s disease, this condition manifests first as visual impairment. Occupational therapy practitioners may approach these clients similar to how they approach clients with low vision; however, it’s also important to consider that depending on their level of cognitive function, the PLWD may not be able to learn new information.

  • It’s crucial to involve the care partner and educate them on how they can support the PLWD.

• Primary progressive aphasia (PPA)

  • Typically presents as expressive aphasia first and impacts other cognitive functions as disease progresses.

  • Sometimes classified as a type of AD.

• Creuzfeldt-Jakob disease

  • Typically comes with an early onset and progresses very rapidly.

  • It’s important to prepare the family for making changes quickly throughout disease progression.

While it may be helpful to know the diagnosis or cause of dementia and to consider the information above, many times PLWD do not get a formal diagnosis. There are benefits and downsides to a formal diagnosis (e.g., not putting the PLWD through hours of potentially stressful testing).

Regardless of the diagnosis, it’s important for the occupational therapy practitioner to collaborate with the care partners and healthcare team to find the root causes or triggers of any challenges identified by the care partner and the patient. 

Resources related to OT and dementia

There are many national organizations that have resources for families and healthcare professionals working with someone living with dementia:

• Dementia Society of America

• Alzheimer’s Association

• The Association for Frontotemporal Degeneration

• Lewy Body Dementia Association

For occupational therapists looking for more support in dementia care, check out the following resources:

• The Dementia Collaborative

  • Skills2Care® training/certification

  • Dementia Squad: OT professionals who meet bi-monthly to host guest speakers, discuss common challenges in dementia care, and offer support

• The Crisis Prevention Institute 

Conclusion

Caring for someone living with dementia can be difficult and overwhelming at times, and occupational therapy practitioners can help reduce some of this burden for care partners. Occupational therapy practitioners play an essential role in the care of PLWD by providing client and family-centered interventions that enhance participation, safety, and quality of life for both the PLWD and their care partner.

Here’s a quote from one of my clients that I thought was lovely:

“My dad...lived with dementia for nearly ten years before passing away in November. He lived well—with dignity and humor—directly due to the [occupational therapy] services my family received...The burden on our family, specifically on my mom, was lifted considerably once we started working with [our occupational therapist]...High quality of life with dementia is achievable, both for the diagnosed and for their caregivers, with expert-level support...Their interventions are game-changers and have the potential to turn dementia from a death sentence into a manageable chronic disease.”