**Recognizing Pain in Persons with Dementia/Cognitive Impairment**

Marti Buffum, DNSc, APRN, BC, CS

VA Pain Summit

September 26-27, 2007

**Summary of presentation:**

-   Identification of signs of pain in persons with severe cognitive
    impairment

> Definition is essential: discomfort includes objective signs of
> possible pain and includes behavioral manifestations and negative
> emotional or physical signs
>
> Aspects to consider: bias of observer, unknown usual patient behaviors
> from past prior to cognitive impairment, and subjective
> interpretations of facial expressions

-   Knowing type of cognitive impairment is helpful for understanding
    communication deficits, executive function, memory deficits, speech
    problems, idiosyncratic responses, expectation for rehabilitation,
    etc

-   Understanding what the person may have been like prior to cognitive
    impairment---pain issues and locations/conditions/timing, preferred
    analgesics, expressions and behaviors when in pain

-   Persons with dementia are usually older; chronic conditions
    associated with pain increase with aging and might include systems
    such as: musculoskeletal, GI, cardiovascular, cancers, headaches,
    neuropathy

-   No standard measure exists for determining pain in elderly with
    dementia

-   Role of family caregivers in learning about pain is not well
    established and family are often not included in pain discussions
    when patients move between settings

-   Scales for measuring pain are plentiful (since 1992, primarily) and
    can be accessed at <http://www.cityofhope.org/prc/elderly.asp>
    International studies have yielded new information on some of these
    tools. Generally there is lack of consensus between US and
    international appraisals of psychometrically sound tools. The most
    promising from international viewpoint are PACSLAC and Doloplus2.
    From US view the most promising are Discomfort Scale, NOPPAIN,
    PAINAD.

-   Issues related to scales include: not specific to pain, discomfort
    does not always mean pain, scores on the scales are not comparable
    with other tools (0-10) as most persons have only one or two of the
    many behaviors

-   While not a scale per se, a clinically useful approach is a
    systematic checklist for ruling out all possible causes of
    discomfort---hunger, thirst, loneliness, fatigue, wanting to be in
    another location, anger, frustration, constipation, pain

-   The VA Office of Nursing Services has collaborated with DoD for
    handoffs for veterans with TBI transitioning out of the military;
    the Checklist of Nonverbal Pain Indicators was selected, possibly
    because descriptors are quite general (vocal complaints, facial
    grimaces, bracing, restlessness, rubbing, verbal statements)

-   There are no established scales for cognitive impairment associated
    with TBI; there are scales for nonverbal, noncommunicative patients
    (e.g., pediatric and intensive care/sedation scales)

-   In sum, persons with dementia or cognitive impairment may have pain
    just like other people, particularly if painful conditions exist or
    painful procedures are done.

-   Persons with communicative issues and cognitive impairment need
    advocates who know them; all of the health care team should be
    included in treating and evaluating responses to treatment

-   Communication between professionals and family caregivers is needed
    to determine pain responses; while the norm has been undertreatment,
    it is possible to overtreat also.

**Areas needing further examination:**

Test pain scales for the TBI patients (OEF/OIF vets)

Explore the role of family as part of the health care team

Empower family caregivers with tools for identifying and reporting pain

Educate staff about pain responses in patients with TBI/cognitive
impairment

**Feedback from the Summit:**

-   What type of measurement might be best for determining different
    levels of pain in these patients?

-   Family and staff education are needed to provide consistent care
    that is customized to the patient.

-   Study shared decision-making involving family and health care team.

-   Apply for a Rapid Response Project\-\--try existing tools in two
    polytrauma settings; examine outcomes of interventions (define the
    outcomes to be measured!)

-   Utilize clinical reminders for assessing, intervening, and
    reassessing pain

-   Compile a list of possible painful conditions in the particular
    populations (TBI) and determine types/level of pain. If persons
    without TBI would have pain, assume those with TBI would have pain
    (this is similar to the approach with dementia patients).

-   Explore transferability of the measurement methods for
    pain/discomfort in dementia to the younger OEF/OIF TBI veterans.
    Explore validity issues in utilizing tools designed for persons with
    dementia; try existing tools but consider alterations and
    development of new ones