Chapter 4: Resident baseline characteristics

Steve Iliffe; Jane Wilcock; Vari Drennan; Claire Goodman; Mark Griffin; Martin Knapp; David Lowery; Jill Manthorpe; Greta Rait; James Warner

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Iliffe S, Wilcock J, Drennan V, et al. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Southampton (UK): NIHR Journals Library; 2015 Apr. (Programme Grants for Applied Research, No. 3.3.)

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Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM).

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Appendix 58Chapter 4: Resident baseline characteristics

TABLE 110

Phase 1: recruitment and retention rates

Care home	Recruitment (n)	Recruitment rate (%)	Retention (n)	Retention (%) at end of Phase 1
CH1	20	71.4	15	75.0
CH2	25	62.5	19	76.0
CH3	16	50.0	12	75.0
CH4	23	76.7	19	82.6
CH5	34	54.0	25	73.5
CH6	15	71.4	10	66.7
Total	133	62.2	100	75.2

TABLE 111

Resident age, length of stay^a

Care home	CH1	CH2	CH3	CH4	CH5	CH6
Median age at admission, years (mean, SD)	84.4 (84.4, 6.15)	87.3 (86.3, 8.55)	87.5 (86.0, 4.63)	86.5 (83.7, 5.61)	82.7 (82.0, 6.56)	83.7 (82.8, 7.06)
Median age at baseline, years (mean, SD)	88.7 (87.4, 6.16)	90.4 (89.51, 8.33)	89.7 (88.7, 5.77)	88.1 (85.7, 5.85)	84.9 (83.5, 6.22)	84.3 (83.7, 7.41)
Median length of residency, years (mean, SD)	2.5 (3.0, 2.16)	3.4 (3.2, 1.84)	2.0 (2.8, 2.13)	1.6 (2.0, 1.77)	1.3 (1.5, 1.00)	0.2 (1.0, 2.20)

a: Source: care notes.

TABLE 112

Admission route^a

Place of previous residence (N = 120)	n	%
Own home	52	43.3
Relative’s home	7	5.8
Hospital	35	29.2
Care home	13	10.8
Sheltered housing – warden controlled	13	10.8
Total	120	100.0
Reason for admission (N = 91)
Following death of spouse	3	3.30
Resident isolated	5	5.50
Concerns about safety	8	8.80
Deterioration of health	16	17.60
Resident unable to cope living independently	31	34.10
Carers no longer able to cope	11	12.10
Short-term stay into long-term placement	7	7.70
Needs unmet in previous accommodation	4	4.40
Other	6	6.60
Total	91	100.0

a: Source: care notes.

TABLE 113

Dementia diagnosis^a

Recorded diagnosis of dementia (N = 98)
Type	n	%
Alzheimer’s disease	38	38.80
Vascular dementia	16	16.30
Mixed	5	5.10
Lewy body	2	2.00
Korsakoff syndrome	1	1.00
Other	1	1.00
Not recorded	35	35.70
No recorded diagnosis	35	26.30
Source
Neurologist	1	1.00
Social worker	2	2.00
Consultant psychiatrist	12	12.30
Assessment	4	4.10
Brain scan	1	1.00
SMHT	7	7.20
CPN report	1	1.00
Memory clinic	2	2.00
Not recorded	68	69.40
No recorded diagnosis	35	26.30

: CPN, community psychiatric nurse; SMHT, Specialist Mental Health Team.
a: Source: care notes.

TABLE 114

Activities of daily living record in care notes

ADL	Recorded (N, %)	No record (N, %)	Total (N, %)
(In)continence	131 (100)	0 (0.0)	131 (100)
Personal care	131 (99.2)	1 (0.8)	132 (100)
Maintaining a safe environment	128 (97.7)	3 (2.3)	131 (100)
Eating and drinking	128 (97.0)	4 (3.0)	132 (100)
Toilet use	92 (70.2)	39 (29.8)	131 (100)
Sleeping	61 (47.7)	67 (52.3)	128 (100)
Expressing sexuality	19 (14.5)	112 (85.5)	131 (100)
Breathing	13 (9.8)	119 (90.2)	132 (100)

TABLE 115

Function within care homes (ADL; N = 133)

Function	CH1	CH2	CH3	CH4	CH5	CH6	Total
ADL^a
(In)continence, n (%)
Incontinent	13 (68.4)	5 (20.8)	7 (43.8)	11 (47.8)	13 (38.2)	4 (26.7)	53 (40.5)
Occasional accident	0 (0)	2 (8.3)	1 (6.3)	0 (0)	2 (5.9)	1 (6.7)	6 (4.6)
Continent	6 (31.6)	17 (70.8)	8 (50.0)	12 (52.2)	19 (55.9)	10 (66.7)	72 (55.0)
Personal care, n (%)
Needs assistance of up to two people	4 (21.1)	8 (33.3)	7 (43.8)	18 (78.3)	7 (20.6)	6 (40)	50 (38.2)
Needs assistance of one person	15 (78.9)	16 (66.7)	7 (43.8)	4 (17.4)	26 (76.5)	5 (33.3)	73 (55.7)
Independent	0 (0)	0 (0)	2 (12.5)	1 (4.3)	1 (2.9)	4 (26.7)	8 (6.1)
Maintaining a safe environment, n (%)
Immobile	3 (15.8)	2 (8.7)	1 (6.7)	2 (8.7)	3 (9.1)	0 (0.0)	11 (8.6)
Needs supervision	5 (26.3)	7 (30.4)	4 (26.7)	2 (8.7)	11 (33.3)	5 (33.3)	34 (26.6)
Independent (with or without mobility aid)	11 (57.9)	14 (60.9)	10 (66.7)	19 (82.6)	19 (57.6)	10 (66.7)	83 (64.8)
Eating and drinking, n (%)
Full assistance	7 (35)	6 (28.6)	4 (25)	4 (17.4)	8 (24.2)	2 (13.3)	31 (24.2)
Minimal assistance	3 (15)	2 (9.5)	1 (6.3)	2 (8.7)	3 (9.1)	1 (6.7)	12 (9.4)
Independent	10 (50)	13 (61.9)	11 (68.8)	17 (73.9)	22 (66.7)	12 (80)	85 (66.4)
Toilet use, n (%)
Needs assistance of up to two people	2 (15.4)	3 (15)	3 (25)	0 (0)	4 (21.1)	2 (15.4)	14 (15.2)
Needs assistance of one person	7 (53.8)	7 (35)	2 (16.7)	2 (13.3)	2 (10.5)	3 (23.1)	23 (25)
Independent	4 (30.8)	10 (50)	7 (58.3)	13 (86.7)	13 (68.4)	8 (61.5)	55 (59.8)

a: Source: care notes.

TABLE 116

Event categories

Event category	Detail as recorded in care notes
Infection	Upper respiratory tract, chest, urinary tract, eye, thrush, catheter-induced penile tear, discharge (anal, penile), raised temperature
Gastrointestinal	Vomiting, diarrhoea, constipation
Pain	Increased pain, headache
Stroke/transient ischaemic attack	Suspected stroke or transient ischaemic attack
Carcinoma	Suspected or spreading carcinoma
Leg/ankle swelling	Leg and/or ankle swelling
Tissue viability	Pressure ulcer, blister, tear, soreness
Confusion	Increased confusion, absence
General deterioration	General ill health, general deterioration, generally unwell, increased frailty, increased weakness
Falls^a	Falls
Eating and drinking	Loss of appetite, difficulty swallowing, supplementary feeds, unable to eat, unable to drink, weight loss
Sleepiness	Increased sleepiness
Withdrawal	Increasingly withdrawn, no longer enjoys activities as s/he used to
Skin colour	Pale, skin colour change
Decreased mobility	Reduced mobility, increased stiffness
Incontinence	Urine, faeces
Refusing personal care	Repeatedly refusing personal care
Breathing	Laboured breathing, breathlessness
Agitation	Increased agitation, aggressive behaviour towards other residents
Distress	Low mood, tearfulness, ‘wants to die’
Other	Muscle spasms, ‘floppiness’, not his or herself, lethargy, altered level of consciousness, increased difficulty in communicating, disturbed sleep, dehydration, mouth sores, seizure, unsteadiness, nausea, drowsiness, weight gain, shaking, rectal prolapse, renal and heart failure, dizziness, fainting, bleeding (penile, vaginal, nose, blood in stools), lip swelling, face swelling, unresponsive

a: Falls as recorded in care notes up to 3 months preceding baseline extraction or up to the previous date of extraction at time point 2 and time point 3.

TABLE 117

Events at baseline, time point 2, and time point 3^a

Type of event^b	Baseline (N = 133)		Time point 2 (N = 127)		Time point 3 (N = 112)
Type of event^b	n	%	n	%	n	%
Infection	31	23.30	20	15.70	29	25.90
Gastrointestinal	9	6.80	16	12.60	27	24.10
Pain	3	2.30	5	3.90	3	2.70
Stroke/transient ischaemic attack	2	1.50	2	1.60	2	1.80
Carcinoma	1	0.80	2	1.60	4	3.60
Leg/ankle swelling	4	3.00	3	2.40	4	3.60
Tissue viability	10	7.50	15	11.80	11	9.80
Confusion	11	8.30	13	10.20	15	13.40
General deterioration	1	0.80	8	6.30	4	3.60
Falls^c	29	21.80	39	30.70	33	29.50
Eating and drinking	36	27.10	45	35.40	37	33.00
Sleepiness	11	8.30	22	17.30	36	32.10
Withdrawal	0	0.00	4	3.10	8	7.10
Skin colour	0	0.00	2	1.60	2	1.80
Decreased mobility	0	0.00	2	1.60	4	3.60
Incontinence	15	11.30	36	28.30	38	33.60
Refusing personal care	0	0.00	1	0.80	3	2.70
Other	8	6.00	10	7.90	19	17.00
Breathing	1	0.80	1	0.80	3	2.70
Agitation	2	1.50	9	7.10	12	10.70
Distress	0	0.00	2	1.60	5	4.50

a: Source: care notes.
b: See Table 116 for detail of event categories.
c: Falls as recorded in care notes up to 3 months preceding baseline extraction or up to the previous date of extraction.

TABLE 118

Falls at baseline, time point 2 and time point 3

Time period	CH1	CH2	CH3	CH4	CH5	CH6	Total
At least one fall up to 3 months preceding baseline or up to the previous date of extraction
Baseline (N = 133), n (%)	5 (25.0)	6 (24.0)	2 (12.5)	4 (17.4)	9 (26.5)	3 (20.0)	29 (21.8)
Time point 2 (N = 127), n (%)	8 (40.0)	9 (37.5)	4 (26.7)	5 (22.7)	10 (32.3)	3 (20.0)	39 (30.7)
Time point 3 (N = 112), n (%)	9 (47.4)	2 (10.0)	2 (14.3)	9 (42.9)	6 (23.1)	5 (41.7)	33 (29.5)

TABLE 119

Level of involvement in end-of-life discussions (n, %)

Resident, consultee and family	8 (6.0)
Resident and consultee	3 (2.3)
Resident and family	7 (5.3)
Consultee and family	10 (7.5)
Family	18 (13.5)
Consultee	14 (10.5)
Resident	10 (7.5)
No evidence of discussions on end-of-life wishes	53 (39.8)
Unclear	10 (7.5)

TABLE 120

Phase 1 attrition

Attrition	CH1	CH2	CH3	CH4	CH5	CH6	Total
Baseline
Deceased: care home		EoL0201064	EoL0301074				2
Deceased: hospital					EoL0501171		1
Transferred					EoL0501165		1
Time point 2
Deceased: care home	EoL0101015			EoL0401148^a			2
Deceased: hospital					EoL0501154		4
					EoL0501156	EoL0601223
					EoL0501209
Transferred			EoL0301083		EoL0501181	EoL0601215	3
Time point 3
Deceased: care home	EoL0101013		EoL0301090	EoL0401127		EoL0601217	6
Deceased: care home	EoL0101021			EoL0401133^a			6
Deceased: hospital	EoL0101023	EoL0201044^a			EoL0501192	EoL0601233	7
		EoL0201062^a			EoL0501206
		EoL0201067^a
Transferred					EoL0501199^a	EoL0601221	2
End of Phase 1
Deceased: care home	EoL0101022	EoL0201056	EoL0301091	EoL0401130			5
Deceased: care home		EoL0201068					5
Total deaths (%)	5	6	3	4	6	3	27 (20.3)
Total transfers (%)	0	0	1	0	3	2	6 (4.5)
Total (%)	5 (25)	6 (24)	4 (25)	4 (17.4)	9 (26.5)	5 (33.3)	33 (24.8)

a: Care notes unavailable for review at time point (post-death analysis interview only, where appropriate).
: Italicised resident identifiers denote inclusion in survival analysis.

Copyright © Queen’s Printer and Controller of HMSO 2015. This work was produced by Iliffe et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK286179

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Iliffe S, Wilcock J, Drennan V, et al. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Southampton (UK): NIHR Journals Library; 2015 Apr. (Programme Grants for Applied Research, No. 3.3.) Appendix 58, Chapter 4: Resident baseline characteristics.
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