Harmony at Home: A Pilot Telehealth Program for Rural ADRD Caregivers
Condition: Alzheimer Disease; Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders
MeSH terms: Alzheimer Disease; Dementia; Nervous System Diseases; Neurodegenerative Diseases; Brain Diseases; Central Nervous System Diseases; Tauopathies; Mental Disorders; Neurocognitive Disorders
Study type: Interventional

Summary: 
      There is a need for caregiver-initiated and -implemented non-pharmacological interventions
      directly to and for the person with dementia, including environmental assessment and
      modification, as first-line treatments for behavioral and psychological symptoms of dementia
      (BPSD) in persons living with dementia (PLWD). Delivered via telehealth, Harmony at HOME
      (H@H) aims to train caregivers of persons with moderate to severe ADRD in the skills of
      assessing and modifying the home environment to promote "person-environment fit," a concept
      that posits that the ability to access features within a built environment (e.g. bathroom,
      stairs,) or that factors within the environment itself (lighting, noise level, temperature),
      especially when linked with individualized social support, contribute to or even shape
      behavior.

      In addition to the intervention, the first 10 caregiver participants to enroll will also be
      invited to participate in two focus groups that will be facilitated during and after the
      intervention. The first focus group focuses on experiences as a dementia caregiver in rural
      areas. The second focus group focuses on providing feedback regarding caregivers'
      perceptions, acceptability, and usefulness of the H@H intervention. These focus groups will
      be conducted as structured interviews with open-ended questions that encourage participants
      to share their experiences.
    

Detailed description: 
      Behavioral disruptions by individuals with Alzheimer's disease and related dementias (ADRD)
      are reported in nearly 90% of persons living with ADRD. Such behavioral and psychological
      symptoms of dementia (BPSD) are highly correlated with increased caregiver burden and
      burnout, decreased quality of life for the person living with dementia and their caregiver,
      institutionalization, and patient mortality. There is a need for caregiver-initiated and
      -implemented non-pharmacological interventions directly to and for the person with dementia,
      including environmental assessment and modification, as first-line treatments for BPSD in
      persons living with dementia (PLWD). Delivered via telehealth, Harmony at HOME (H@H) aims to
      train caregivers of persons with moderate to severe ADRD in the skills of assessing and
      modifying the home environment to promote "person-environment fit," a concept that posits
      that the ability to access features within a built environment (e.g. bathroom, stairs,) or
      that factors within the environment itself (lighting, noise level, temperature), especially
      when linked with individualized social support, contribute to or even shape behavior. In
      ideal circumstances, adults adjust or adapt to meet the demands of the environment; likewise,
      in the ideal, environments are designed in ways that facilitate positive behaviors. ADRD
      progressively interferes with an individual's capacity to self-optimize person-environment
      fit; in such cases, caregivers have the opportunity to create a supportive environment that
      negates some behavioral challenges and encourages functional activity engagement. H@H seeks
      to help caregivers acquire the skills and sense of mastery that will enable them to create
      such supportive environments within the homes of people with dementia. H@H will be tested
      with caregivers and the person living with dementia in the Appalachian region of rural
      Kentucky, a region with the poorest healthcare options for older adults in the country and
      plagued with extremely high rates of co-morbid conditions, including ADRD. Access to quality
      caregiver training, in-home caregiver support, and respite is significantly limited. This
      pilot study will enable the investigators not only to establish the feasibility of the
      program but to demonstrate this capacity with a population of caregivers and persons with
      dementia that is in particular need and difficult to reach.
    

Intervention name(s): Harmony at HOME (H@H)
Intervention type(s): Behavioral
Intervention description(s): H@H is a 6-week telehealth intervention delivered by an occupational therapist during weekly visits.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Telehealth; Caregiver burnout; Behavioral and psychological symptoms of dementia; BPSD; Environment