“I don’t really know how to help her.” Family caregivers’ capabilities, opportunities and motivations to provide hearing support to long-term care home residents with dementia

Figures & data

Table 1. Family caregiver demographics.

Demographic	Survey (Stage 1) N (%) N = 87	Interview (Stage 2) N (%) N = 6
Gender
Woman	52 (59.8%)	6 (100%)
Man	35 (40.2%)
Ethnicity
White British	45 (51.7%)	6 (100%)
Black/Black British	27 (31.1%)
Asian/Asian British	13 (14.9%)
Mixed/Multiple ethnic group	2 (2.3%)
Age	Mean = 37.4 (SD = 12.2)	Mean = 57.8 (SD = 9.3)
20–40	63 (72.4%)
41–60	11 (12.6%)	3 (50%)
61+	7 (8.1%)	2 (33.4%)
Did not answer	6 (6.9%)	1 (16.6%)
Relationship to resident
Daughter/Son	28 (32.2%)	5 (83.3%)
Niece/Nephew	23 (26.4%)
Granddaughter/Grandson	5 (5.8%)
Sister/Brother	3 (3.4%)
Husband/Wife/Partner	1 (1.2%)
Cousin	4 (4.6%)
Daughter-in-law	2 (2.3%)	1 (16.7%)
Unspecified e.g., “relative”	17 (19.5%)
Did not answer	4 (4.6%)
Frequency of visits to resident (prior to COVID-19 restrictions)
Daily	3 (3.5%)
Once a week or more	16 (18.4%)	2 (33.3%)
Once a month or more	31 (35.6%)
Less than once a month	3 (3.5%)
Unspecified e.g., “often” or “frequently”	17 (19.5%)
Did not answer/ Relative not in care home prior to COVID-19 restrictions	17 (19.5%)	4 (66.7%)
Highest level of education
No Qualifications	1 (1.2%)
Diploma or equivalent	13 (14.9%)	2 (33.3%)
GCSE or equivalent	6 (6.9%)	1 (16.7%)
A-Level or equivalent	4 (4.6%)	1 (16.7%)
Undergraduate degree or equivalent	48 (55.2%)	2 (33.3%)
Postgraduate degree or equivalent	13 (14.9%)
Prefer not to answer	2 (2.3%)

Note: GCSE – academic qualifications taken in UK education, usually at 16 years old. A-Level – academic qualifications taken in UK education, usually at 18 years old.

Table 2. Resident demographics (reported by family caregivers).

Demographic	Survey (Stage 1) N (%) N = 87	Interview (Stage 2) N (%) N = 6
Dementia diagnosis
Alzheimer’s disease	13 (14.9%)	2 (33.3%)
Vascular dementia	18 (20.7%)
Mixed dementia	29 (33.3%)	3 (50.0%)
Dementia with Lewy bodies	12 (13.8%)
Frontotemporal	6 (6.9%)
Mild cognitive impairment	6 (6.9%)
No formal diagnosis	1 (1.1%)
Unknown	2 (2.3%)	1 (16.7%)
Stage of dementia
Early	19 (21.8%)
Middle	53 (60.9%)	5 (83.3%)
Late	13 (14.9%)
Unknown	2 (2.3%)	1 (16.7%)
Hearing loss severity
Mild	20 (23.0%)
Moderate	47 (54.0%)	5 (83.3%)
Severe	19 (21.8%)	1 (16.7%)
Unknown	1 (1.1%)
Level of care received
Low-level	4 (4.6%)	1 (16.7%)
Mid-level	48 (55.2%)	5 (83.3%)
High-level	35 (40.2%)
Time since moving into LTCH	Mean months = 31.3 (SD = 27.0)	Mean months = 19.2 (SD = 20.7)
Less than 1 year	17 (19.5%)	4 (66.7%)
1–2 years	18 (20.7%)
2–3 years	14 (16.1%)	1 (16.7%)
4–5 years	6 (6.9%)	1 (16.7%)
Over 5 years	7 (8.1%)
Unspecified e.g., “long time”	9 (10.3%)
Did not answer	16 (18.4%)
LTCH type
Residential	35 (40.2%)	5 (83.3%)
Nursing	34 (39.1%)
Dementia specialist	17 (19.5%)	1 (16.7%)
Did not answer	1 (1.1%)
LTCH ownership
Private company	48 (55.2%)	5 (83.3%)
Local authority	22 (25.3%)
Charity/Voluntary	15 (17.2%)	1 (16.7%)
Don’t know	1 (1.1%)
Did not answer	1 (1.1%)

Note: Low-level care – resident generally independent. Mid-level care – resident requires assistance with care, independent with other activities. High-level care – resident needs full assistance, may receive care from a nurse. Residential LTCHs – accommodation, meals, personal care provided. Care Home with Nursing – registered nurses for residents with complex health needs employed. Dementia Specialist Homes – for residents with advanced cognitive and behavioural needs. Privately funded – LTCHs owned by private companies. Local Authority funded – LTCHs owned by UK district, borough or county council. Charity/voluntary owned – LTCHs run by charities, volunteers or not-for-profit companies.

Figure 1. Family caregivers’ methods of providing hearing support to residents with dementia. Note. “Other” responses included: “flashing phone light.” Additional open-ended responses clarified “communication techniques” as: “eye contact and speaking louder,” “speak more clearly” and “hand gestures that mirror the word I’m trying to convey.”

A bar chart showing family caregivers’ methods of providing hearing support to their relative with dementia living in a care home. The most common response was using communication techniques (49.4%), followed by assistive listening devices (41.4%), hearing aids (39.1%), writing things down or using flashcards (27.6%), and other methods (3.4%).

Figure 2. Reasons given for incorrect use of hearing aids by residents with dementia. Note: Open-ended “Other” responses (4.6%) included “mum wouldn’t cope with placing a hearing aid” and “sometimes, even with hearing aids, it is difficult to communicate.”

A bar chart showing reasons why residents with dementia use hearing aids incorrectly, according to survey participants. The most common reason is “not tolerated/refuses” (29.9%), followed by “hard to use” (27.6%), “forgets to use them” (20.7%), “lost or broken” (16.1%), “too expensive” (16.1%), “not fitting well” (11.5%), “not effective” (9.2%), and “other” (4.6%).

Figure 3. Box-and-Whisker plot displaying the distribution of the scores for the six COM-B domains. The Central black line shows the median score for each domain, the grey box encompasses the interquartile range (IQR) and the whiskers display the range of responses. There is one outlier for the domain Psychological Capability, which is not influential.

A box-and-whisker plot that displays the distribution of scores for the six COM-B domains. The central black line shows the median for each domain. For physical opportunity, this median is 6. For all other domains, it is 7. The grey box displays the interquartile range and the whiskers show the range. The maximum data value for all domains was 10. The minimum data value for physical capability, automatic motivation and social opportunity was 0, for reflective motivation and physical opportunity this was 1 and or physical capability this was 2. There is one non-influential outlier for physical capability at point 0.

Table 3. Summary of key findings: survey COM-B domain scores, additional survey findings, prominent TDF domains, themes, intervention functions, exemplar interventions.

COM-B domain	COM-B score M (SD)	Additional survey findings	Prominent TDF domain	Theme (generated from qualitative data)	Intervention functions	Example intervention for family caregivers
Physical capability	6.5 (2.4)		N/A
Psychological capability	6.6 (2.4)	63.2% want to know more about providing hearing support.	Knowledge	Uncertainty about how to provide effective hearing support	Education	Providing educational resources (booklets, leaflets) on hearing aid management (cleaning, inserting, checking etc.) for family to view within the LTCH. Provide information about alternative amplification devices.
Physical opportunity	5.9 (2.2)	55.2% of residents see an audiologist, 43.5% of appointments take place in the LTCH. 60.9% of residents have earwax removed, mostly by a nurse in the LTCH (49.1%).	Environmental context & resources	Poor collaborations between LTCHs and audiology services	Environmental restructuring Enablement	Family to accompany resident to audiology appointments for support. Encourage family to inform audiologist of residents’ preferences, any difficulties and need for flexibility (e.g., shorten test duration, family to accompany resident into testing booth).
				Low priority of hearing loss in LTCHs	Education	Increasing family’s awareness of the implications of unsupported hearing loss (anxiety, depression, agitation, falls, etc.) to boost its priority.
		Open-ended responses emphasized impact of COVID-19 lockdown on audiological care and impact of face masks.		Impact of COVID-19 restrictions	Environmental restructuring	Provision of transparent face masks for family to wear when at the LTCH to ease communication with residents e.g., allow for lip-reading and visual cues.
		Sensory friendliness of the LTCH: M = 6.2 (SD = 2.1), on a 0–10 scale)
Social opportunity	6.1 (2.7)	Family working alongside staff to provide hearing support to residents with dementia: M = 6.2, (SD = 2.6), on a 0–10 scale. Variable open-ended responses on collaborating with LTCH staff.	N/A		To be boosted via addressing “social/ professional role and identity” (see below).
Reflective motivation	6.7 (2.1)	Few family caregivers see themselves as responsible for hearing support in the LTCH (15.3%). Most see themselves as responsible for arranging audiology appointments for their relative (52.9%). Few believe hearing support provision (10.6%) or arranging audiology appointments (14.1%) to be a collaborative responsibility between themselves and staff.	Social/professional role & identity	Lack of clearly defined responsibilities for hearing support	Education, Persuasion	Staff and family to determine roles and responsibilities for hearing support and document these in care plans when the resident first moves to the LTCH.
		Residents with dementias’ correct use of hearing aids: M = 5.6 (SD = 2.5), on a 0–10 scale, due to refusal (29.9%), difficultly using (27.6%) or forgetting to use (20.7%).	Optimism	Difficulties that residents with dementia experience with hearing aids	Environmental restructuring, Education	Provision of low-cost, easy-to-use hearing devices (e.g., assistive listening/personal sound amplification devices) within LTCHs for residents to use in place of hearing aids, or in conjunction with hearing aids, if needed. Raising awareness of different types of hearing devices and ensuring that family know that they can be used and can be effective. Educating family on implementing a flexible, transitionary period for hearing device (hearing aid or other) uptake for residents with dementia who struggle with devices.
Automatic motivation	6.2 (2.7)		N/A