Article Figures & Data
Figures
- Figure 1. Themes and subthemes identified in the data
Tables
- Table 1. Inclusion and exclusion criteria for people with dementia, family caregivers, and healthcare professionals
Person with dementia Inclusion criteria Diagnosis of dementia as assumed by information provided by the agencies involved (that is, Join Dementia Research records), or by verbal confirmation from the person themselves or their caregiver.
Lives in the community (lives in their own home alone, with family members, in an assisted living facility, retirement community, or residential home).
Has a named caregiver willing to participate in a dyadic interview.
Able to vocalise a willingness to take part in an interview.
Verbally proficient in English.
Exclusion criteria Currently or recently experiencing any major psychological, physical distress, or emotive or stressful life events which taking part in an interview may exacerbate (as asked to the caregiver).
Family caregivers Inclusion criteria Self-identifies as the current or previous primary caregiver for an individual diagnosed with dementia. This may include a family member, relative, neighbour, or friend who is involved in care or spends the most time with the person with dementia.35
Willing to take part in an interview (alone or with the person with dementia).
Verbally proficient in English.
Exclusion criteria Aged <16 years.
Healthcare professionals Inclusion criteria Self-reports as working with people with dementia in a professional capacity.
Has experience providing care for people with dementia in a professional capacity.
Willing to take part in an interview.
Verbally proficient in English.
Exclusion criteria Not directly involved in the provision of care for people with dementia.
- Table 2. Demographic details of interview participants with dementia and family caregivers of people with dementia.
Pseudonym Relationship Age, years Previous occupation Diagnosis (date)c,d Cognitive test score (test, date)c,d Current pain conditionsc,d Pain nowe Pain in previous 4 weekse Patriciaa Wife 82 OT AD (2014) 18/30 (MMSE, 2016) Spinal injury Moderate Moderate Robert Husband 82 Aviation Caregiver – – Unable to judge Unable to judge Jamesa Husband 74 Purchaser AD (2016) 87/100 (ACE-R, 2016) Neck pain None None Mary Wife 74 PA Caregiver – – None None Barbarab Wife 67 Teacher PCA – Neuralgia, osteoporosis – – John Husband 67 Electrician Caregiver – – Severe Moderate Williama Husband 78 Lecturer AD (2012) 24/30 (MMSE, 2014) Osteoarthritis (knees) Mild Mild Carol Wife 74 Probation officer Caregiver – – None Mild Richarda Father 83 Tile making Mixed (2015) Unknown Osteoarthritis (back) Moderate Moderate David Son 52 Cateringf Caregiver – – None Mild Marka Husband 73 Probation officer AD (2014) 81/100 (ACE-R, 2014) Tooth pain None None Brenda Wife 68 Nurse Caregiver – – None Mild Stevena Husband 57 Postman Mixed/FTD (2017) Mild (MMSE, 2017) Back pain None Mild Michelle Wife 53 Caregiver – – None Mild Lindaa Wife 77 Administrative FTD (2017) 25/30 (MMSE, 2017) Osteoarthritis, gout Mild Unanswered Charles Husband 77 Optometrist Caregiver – – Moderate Moderate Grega Husband 64 RAF Mixed/FTD (2017) 48/100 (ACE-R) Frozen shoulder, tennis elbow, spondylitis, osteoarthritis (hips) Moderate Moderate Denise Wife 66 Shop assistant Caregiver – – Moderate Moderate aPerson with dementia. bPerson with dementia did not participate in the interview. cInformation obtained from Join Dementia Research records. dInformation obtained during the interview (from person with dementia or caregiver). eThe pain experienced by the person with dementia using the Revised Iowa Pain Thermometer. fCurrently employed. ACE-R = The Addenbrooke's Cognitive Examination Revised. AD = Alzheimer’s disease. FTD = frontotemporal dementia. MMSE = Mini-Mental State Examination Score. OT = occupational therapist. PA = personal assistant. PCA = posterior cortical atrophy. RAF = Royal Air Force.
Pseudonym Sex Current profession Year(s) of experiencea Tom Male GP 12 Alan Male GP 33 Jenny Female GP 30 Jessica Female GP 1 Muhammad Male GP 3 Lisa Female GP 11 Ishann Male GP 1 Amy Female GP 5 Chris Male GP 7 Prisha Female Consultant — old-age psychiatry 10 Hayma Female Consultant — old-age psychiatry 8 Aska Female Associate specialist — old-age psychiatry 11 Rina Female Consultant — old-age psychiatry 3 Mel Female Associate specialist — old-age psychiatry 18 ↵a In current role.
Supplementary Data
SUPPLEMENTARY MATERIALS
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Supplementary material is not copyedited or typeset, and is published as supplied by the author(s). The author(s) retain(s) responsibility for its accuracy.
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