Dementia and quality of life in long-stay care in Ireland Edel Murphy Discipline of General Practice and School of Nursing and Midwifery NUI Galway

Questions What is the quality of life of residents with dementia in long-stay care in Ireland? What predicts quality of life of these residents? Is there a relationship between QOL, depression and agitation? What are the methodological challenges associated with measuring quality of life?

DARES RCT DementiA Education Programme incorporating REminiscence for Staff Randomised Controlled Trial Other DARES team members: Dympna Casey, Adeline Cooney, Declan Devane, Andrew Hunter, Fionnuala Jordan, Kathy Murphy (all School of Nursing and Midwifery, NUI Galway) Eamon O’Shea (Irish Centre for Social Gerontology)

Background How many people with dementia in Ireland? Estimates only: 1% (2007) or 42,000 (2012) How many in long-stay care? Estimates only: 14,000 (Connolly, 2012) or 6,100 (DoHC, 2011) We do know that this number is growing – estimates that it will triple in 30 years

National dementia strategies: common priorities Early and efficient diagnosis Supporting family carers Provision of services in the community Raising public awareness

National strategies: examples French plan (2008): improving residential care for better QOL for residents Dutch plan (2008): “improve the quality of life of people with dementia and their carers and the provision of the right tools to professionals, enabling them to deliver good quality dementia care” UK implementation plan (2010): living well with dementia in care homes

What is quality of life?

Lawton: quality of life for older people

Quality of Life in long-stay care in Ireland O’Connor and Walsh, 1986: It's our home: The quality of life in private and voluntary nursing homes NCAOP (2000) – framework for quality in long- stay care, with QOL as central objective, but no detail on what components make up QOL

QOL in Irish long-stay setting

Why does quality of life matter? Improvement in health is main purpose of most medical treatments Chronic disease – different domains come into play, e.g. pain, nausea In particular, why does quality of life matter for people with dementia? Quality of life versus quality of care Quality of life should be at centre of inspection process Understanding what influences (predicts) quality of life should influence and direct care processes

Quality of life in dementia: Lawton Behavioural engagement (time use and socially appropriate behaviour) Presence of positive effect states (emotions or moods) and absence of negative effect states (Lawton, 1994) But many different domains relevant to people with dementia identified by different people…

Other domains of quality of life in people with dementia Feelings of belonging Self-esteem Interpersonal relationships Ability to participate in meaningful activities Financial situation Other differentiating factors: Importance of each domain and the domains themselves change over a lifetime

DARES study methodology Enrolling long-stay facilities Enrolling and consenting residents Enrolling and consenting staff Baseline measurements: Cognition – MMSE QOL - Quality of Life in Alzheimer Disease (QOL-AD) Agitation – Cohen-Mansfield Agitation Inventory (CMAI) Depression – Cornell Scale for Depression in Dementia (CSDD)

Quality of Life – Alzheimer Disease Two versions: – Self-rated - resident interviewed by research nurse – Proxy-rated – completed by a professional carer Both versions cover the same 13 domains Detailed instructions are provided, with standard text for the administrator Each item rated Poor, Fair, Good, Excellent (1-4) Total score 13-52; usual scored separately

Quality of Life: AD (interview version for the person with dementia) Interviewer administer according to standard instructions. Circle responses. All responses are confidential. 1.Physical health.Poor (1)Fair (2)Good (3)Excellent (4) 2.Energy.Poor (1)Fair (2)Good (3)Excellent (4) 3.Mood.Poor (1)Fair (2)Good (3)Excellent (4) 4.Living situation.Poor (1)Fair (2)Good (3)Excellent (4) 5.Memory.Poor (1)Fair (2)Good (3)Excellent (4) 6.Family.Poor (1)Fair (2)Good (3)Excellent (4) 7.Marriage.Poor (1)Fair (2)Good (3)Excellent (4) 8.Friends.Poor (1)Fair (2)Good (3)Excellent (4) 9.Self as a whole.Poor (1)Fair (2)Good (3)Excellent (4) 10. Ability to do chores around the house. Poor (1)Fair (2)Good (3)Excellent (4) 11. Ability to do things for fun. Poor (1)Fair (2)Good (3)Excellent (4) 12. Money.Poor (1)Fair (2)Good (3)Excellent (4) 13. Life as a whole.Poor (1)Fair (2)Good (3)Excellent (4)

Demographics Number of participants304 Facilities (public:private)18 (6:12) Mean age84.86 (SD = 7.1), Female69% White Irish99% Mean MMSE12.34 (SD 5.5) Severity of dementia31% severe 61% moderate 8% mild Consent93% by resident 7% next of kin Mean length of stay3.35 years (SD =4, range 1 month to 37 years)

Resident Quality of Life % complete resident questionnaires85% 98% % resident questionnaires missing 1 or 2 items 13% % complete staff questionnaires76% 99% % staff questionnaires missing 1 or 2 items 23%

Resident Quality of Life Similar to other studies - Thorgrimsen (2003), Hoe (2006) Mean self-rated QOL-AD score34.05 (SD 4.9, n=298) Mean proxy-rated QOL-AD score30.26 (SD 5.67, n=299) % complete resident questionnaires85% 98% % resident questionnaires missing 1 or 2 items 13% % complete staff questionnaires76% 99% % staff questionnaires missing 1 or 2 items 23%

Do staff (proxy) and residents ratings correlate? Small, clinically non-significant correlation in overall scores (r = p ≤ 0.01) Higher self-rated scores associated with higher staff-rated scores Resident score > staff score on 12 items Small, clinically non-significant correlations between resident and staff in 9 items (all r < 0.4) No significant correlation between resident and staff ratings for life as a whole

Gold standard to measure QOL? => staff are not a good proxy for self-report quality of life Can also use a composite score, but not commonly used Composite (2:1): mean QOL-AD (SD 4.2) (compared to 34 by resident and 30 by staff) Very strong correlation between resident and composite scores (r=0.90, p ≤ 0.01 ) and strong correlation between staff score and composite score (r=0.66, p ≤ 0.01)

QOL-AD as a measurement scale? Strong, clinically significant correlations between 10 items and overall score (e.g. life as a whole: r=0.499, p ≤ 0.01) => good internal consistency in QOL-AD Can be completed by residents with mild, moderate and severe dementia – very high completion rate in this study Can QOL-AD detect change?

Agitation and quality of life Cohen-Mansfield Agitation Index Used in normal care 29 item scale, each item scored 1 to 7 Items can be grouped into four different domains, cover very wide range of behaviours

NMinMaxMean 1 Std. Deviation% residents 2 Total CMAI Score Pace, aimless wandering % Inappropriate dress or disrobing Spitting (include at meals) Cursing or verbal aggression Constant unwarranted request for attention or help % Repetitive sentences or questions % Hitting Kicking Grabbing onto people Pushing Throwing things Strange noises (weird laughter or crying) Screaming Biting Scratching Trying to get to a different place % Intentional falling Complaining % Negativism % Eating/drinking inappropriate substances Hurt self or others Handling things inappropriately Hiding things Hoarding things Tearing things or destroying property Performing repetitious mannerisms % Making verbal sexual advances Making physical sexual advances General restlessness % Valid N (listwise)288

What do agitation scores tell us? No clinically significant correlations with either self-reported or proxy-reported total QOL scores 33% of residents had total CMAI score ≥ 44 Medium correlation, statistically significant, total CMAI score and proxy-reported QOL (r = ) => weak evidence that staff report a lower QOL for residents with higher agitation, but these residents do not report their own QOL to be lower

Depression and quality of life Mean score on CSDD 4.38 (SD 4.67) 70% of resident CSDD scores absence of significant depressive symptoms Let’s have a look at QOL-AD scores by level of depressive symptoms…

Depression and quality of life Statistically significant difference in self-rated QOL score for the 3 groups => higher levels of depression associated with lower QOL-AD scores, both self-rated and proxy-rated

What predicts quality of life scores? Increased depression and being in a public facility significant predictors of lower QOL and being female slightly predicts higher quality of life

Predictors of quality of life Predictors of self-rate quality of lifePredictors of proxy-rated quality of life Significant predictors of lower QOL: Increased depression Being in a public facility Significant predictors of higher QOL: Being female slightly predicts higher quality of life Significant predictors of lower QOL: Increased depression Longer length of time in facility More severe dementia Higher levels of agitation

Conclusions Assessing quality of life of residents with dementia should become standard practice and should become embedded in the long- stay care inspection process QOL-AD is a reliable instrument Using a composite score as gold standard? Based on measurements, care practices should change to improve quality of life