How Hallucinations Affect Patients and Caregivers Over Disease Course Focus of Study

How Hallucinations Affect Patients and Caregivers Over Disease Course Focus of Study

Visual hallucinations can be common in Parkinson’s patients and others with dementia, but the degree of distress they cause is greatly influenced by the person’s ability to understand and consider them — and have the cognitive resources to do so, a study reports.

Likewise, the tailored support given patients needs to reflect their ability to understand and manage this disease symptom.

The research, “Visual hallucinations in dementia and Parkinson’s disease: A qualitative exploration of patient and caregiver experiences,” was published in the International Journal of Geriatric Psychiatry.

Visual hallucinations — seeing something that others cannot — are a typical manifestation of Parkinson’s disease psychosis, and of dementias like those associated with Alzheimer’s, vascular diseases, and Lewy body dementia (LBD).

Antipsychotic medications like Nuplazid (pimavanserin) — an approved treatment for Parkinson’s psychosis, developed by Acadia Pharmaceuticals — and Clozaril (clozapine), approved to treat severe schizophrenia but used off-label for these patients, have been found to ease symptoms of Parkinson’s disease psychosis without impairing motor function in double-blind, placebo-controlled clinical trials.

But not all psychosis patients can use these medications.

Visual hallucinations are linked to diminished well-being, greater caregiver burden and poorer functional skills, as well as higher rates of nursing home admissions and faster cognitive impairment. How such outcomes might be prevented or slowed in psychosis patients, however, is largely unexplored.

Researchers used qualitative methods to understand the needs, experiences, and coping strategies of Parkinson’s and dementia  patients with visual hallucinations, and their impact on caregivers.

They interviewed 11 such Parkinson’s patients and 10 with dementia, and people who served as informal caregivers (9 for Parkinson’s and 11 for dementia patients).

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Most patients reported having  hallucinations for at least one year, the researchers wrote. A difference noted: Parkinson’s patients tended to see images of people and animals not actually present, while dementia patients “tended to experience people or ‘presence’ hallucinations.”

Patients were asked about their experiences and interpretations of such hallucinations, their impact on relationships and daily life, and information or support they had asked for or received regarding them.

Caregivers were asked to reflect upon their own reactions and any support they might have received.

All patients were assessed for vision, cognition, and motor function skills.

“Differences in the VH [visual hallucinations] experience between persons with dementia and PD were less striking than the overall similarities across conditions at equivalent stages of cognitive and insight impairment,” the researchers wrote.

Patients reported disease aspects such as loss of independence [related to motor decline] and depression as more concerning and difficult than hallucinations, while those with poorer cognitive abilities voiced greater distress with visual hallucinations.

Three overall themes emerged in the study:

  • Insight (comprehension) and distress: The better understanding a patient had of visual hallucinations (i.e., recognizing them as a disease symptom), the less threaten they felt by them, and the more able they were to accept them as part of their life.
  • Caregiving reactions: Caregivers’ reactions were closely related to a patient’s ability to understand hallucinations.  When they felt patients knew they were not real, a simple reassurance was a sufficient reaction. As patients declined, managing visual hallucinations become more challenging.
  • Discussions and support:  Patients generally avoided discussing or seeking support for visual hallucinations because of feelings of being “abnormal,” and the possible stigma they carried. Others either did not think them an important disease symptom, or doubted such discussions would not achieve anything and bring relief.

An ability to understand and distinguish a visual hallucination from reality — called “insight” by the research team — influenced how the threat of such hallucinations was perceived and whether acceptance occurred over time. Reactions to visual hallucinations and coping strategies varied as insights changed with disease progression.

Of note, acceptance came mainly through self-realization and through discussions with caregivers.

“Irrespective of the clinical context, tailored support is required that takes into account the [patient’s] degree of insight and cognitive function,” the researchers wrote.

“Support in early stages should focus on raising awareness of VH, symptom disclosure, stigma reduction, and contact with others affected. In later stages, the focus shifts to informal caregiver needs and a flexible approach to reassuring those affected,” they added.


  1. Alan Tobey says:

    Since the age demographics match — an average age at PD diagnosis of 65 today would put patients in their early 20s at the height of the psychedelic surge in the 70s — I wonder whether “previous psychedelic experience” influences contemporary reactions. As a veteran of those years and multiple positive “inputs,” I actually greeted some recent visual hallucinations (probably from pramipexole at too high a dose) with a sense of nostalgia and even mild pleasure. I wonder if there’s a positive role here in PD; for example, the use of Psilocybin (“mail mushrooms”) in treating PTSD. Now there’s a clinical trial worth signing up for!

  2. Sharu says:

    Oh my husband with PD AGED 71 had visual hallucinations last year for a whole one mnth time. And that did not let him sleep at nite. He was imagining himself at his workplace and managing about 10 people under him and would talk to them. The neurologist lowered the dosage of leva dopa and tried some patches for month. But all that did not help then while visiting India a neurologist put him on psychotic medicine Oleanzipane 2,5 strength morning evening and hallucinations vanished and he sleeps at nite only to get up to use the bthrm for his incontinence!!

  3. Patty says:

    Hi , my 52 year old husband was diagnosed with LBD back in March . His hallucinations are not violent but startling to him . He just started seroqual (sp) and it seem s as though it’s working some . My question is , people with LBD ever stop having hallucinations? Thank you

  4. mervel thomas says:

    My mom 69 , keep seeing kids in her house and people with no feet ,
    She told me at this one man keep bringing pig under her bed , she not sleeping she smelling bad smells

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