Pain in Dementia- Prevalence and Diagnostics

Recent years have seen a steadily increasing scientific interest in pain in
elderly with dementia. Still, much remains unclear. The prevalence of pain in
dementia is uncertain, as is the relation between pain and the different
subtypes of dementia. In addition, the studies published so far often do not
differentiate between the various types of pain e.g. acute vs chronic pain or
nociceptive vs neuropathic pain. Finally, an often overlooked type of pain in
research is orofacial pain, even though it is very likely that this type of
pain is common in elderly with dementia, given their decreased ability to
perform oral care.
Despite the apparent absence of studies differentiating between various types
of dementia, distiguising between the various etiologies and the associated
neuropathology is clinically highly significant. The presence of white matter
lesions is an important part of the pathology and they are known to increase
pain experience.
The two goals of this study are 1. to investigate the prevalence of pain in
elderly with dementia and to examine the relationship between the most
prevalent subtypes of dementia, i.e. AD, VaD, FTD and DLB, and specific types
of pain, e.g. nociceptive pain and (central) neuropathic pain. Another goal of
the present study is to examine the relationship between specific types of
pain, cognitive functioning, and the presence of neuropsychiatric symptoms in
the various subtypes of dementia.

Objectives:
1. To assess the prevalence of pain in elderly with dementia and to study the
relationship between the various subtypes of dementia and the presence of
specific types of pain(e.g. nociceptive pain, neuropathic pain, and orofacial
pain).
2. To study the relationship between various types of pain and cognitive
functioning in elderly with dementia.
3. To study the relationship between various types of pain and the presence of
neuropsychiatric symptoms, and how this is related to the quality of life.

An observational, cross-sectional, and partially longitudinal cohort study. All
participants will be asked about the presence and intensity of pain. If they
are no longer able to communicate, observation and proxy rated scales will be
utilized. In nursing homes, a pain observation scale with an emphasis on pain
due to musculoskeletal disorders will be administered to the nurse or auxiliary
nurse during morning care. When one of the the pain assessment methods produces
a positive indication of pain, a physical examination will be performed with an
emphasis on musculoskeletal pain and signs of neuropathic pain. Furthermore,
all participants will receive a dental examination with special focus on
possible causes of orofacial pain. Other measurements include medication use,
cognitive functioning, ADL functioning, presence of neuropsychiatric symptoms
and quality of life. If pain is present, a differential diagnosis will be made
and this will be given as feedback to the attending physician. The effects of
this feedback on the patients* treatment will be evaluated after three months

The risks of this study are negligible and the burden associated with
participation is minimal.
If participants are unable to complete the questionnaires by themselves, a
proxy-rated scale will be used.
Blood samples are part of standard practice at the COGA/BACO. Blood samples are
taken by means of a venous puncture and minimal risk is expected.
Oral examination (comparable to standard oral examination) will be performed by
a dentist with experience in the care for people with dementia and will be
finished directly if the participant shows resistance to the examination.
Physical examination will be performed by a elderly care medicine trainee with
experience in examine people with dementia. The physical examination will be
performed only if there are signals of the presence of pain based on the
information from the questionnaires.
The participants could benefit from this study due to a better recognition of
pain and more appropriate treatment, or they could benefit as a result of the
oral examination en receive proper treatment for the oral conditions seen at
examination.
In general patients with dementia could benefit from this study by gaining
knowledge on the prevalence and diagnostics of pain in people with dementia.