Table 1 Specific review questions formulated by members of the Public & Patient Involvement Groups, and the evidence found to address these questions. What are the most effective ways to encourage people with dementia to eat, drink and maintain nutritional intake? Information provided here is supplemental to the main findings of this review, and overall evidence is weak or lacking – the review does not definitively show that any intervention is either useful or not useful

1. Type of dementia

For people with different types of dementia (Alzheimer’s, vascular, dementia with Lewy bodies, other types or mixed types), what interventions can help to maintain or improve food intake or nutritional status and fluid intake or hydration status?

Not all interventions reported the type of dementia or cognitive impairment, but those that did enrolled people with AD or a mixture of people with AD and other dementias. There was no reason to suggest that effects of interventions in people with AD were different from those in people with mixed dementia, but more research is needed to clarify.

2. Stage of dementia

What interventions can help to maintain or improve food intake or nutritional status and fluid intake or hydration status in people with mild cognitive impairment, mild/moderate/severe dementia?

Exercise and multicomponent interventions did not usually specify dementia severity.

MCI: One intervention assessed effects of resident and staff education for 269 people with MCI living in an old age hostel, finding no effects on weight or cognition (Kwok 2012).

Mild to moderate dementia: few interventions of dining environment and food service interventions included people with mild dementia. Educational interventions for formal care-givers included people with mild to moderate dementia but effects appeared to depend on the intensity of education and support, rather than degree of dementia of participants, with only the most intensive intervention appearing useful (Mamhidir 2007). Reminiscence cooking and a supported breakfast club, both interventions supporting social interaction, appeared to promote meaningful involvement in people with mild to moderate dementia (Santo Pietro 1998, Huang 2009).

Moderate to severe dementia: most dining environment and food service interventions included people with moderate to severe dementia, so results for these interventions are likely to apply to people with moderate to severe dementia. Educational interventions for formal care-givers included people with moderate to severe dementia but effects appeared to depend on the intensity of education and support, rather than degree of dementia of participants, with only the most intensive intervention appearing useful (Mamhidir 2007). Behavioural interventions in people with severe dementia appeared to promote eating independence, without improving nutritional status (Van Ort 1995, Coyne 1998, Beattie 2004).

3. Setting

• For people with dementia living in residential care or residing in a medical setting, what interventions can help to maintain or improve food intake or nutritional status and fluid intake or hydration status?

• For people with dementia living in their own homes with or without a care-giver (full-time or occasional; close relative or paid care-giver), what interventions can help to maintain or improve food intake or nutritional status and fluid intake or hydration status?

Most of the studies were conducted in various residential or nursing settings, and very few in participants own homes. Generally, effectiveness of interventions related to the effectiveness of interventions in residential settings. For people with dementia living at home nutritional education of caregivers and people with dementia appeared useful in supporting weight in one study (Riviere 2001), but not in two others (Suominen 2013, NutriAlz Trial).

4. Emotional & social issues

For people with dementia, does emotional closeness of the care-giver (e.g. close relative vs paid care-giver) affect the outcomes?

Emotional closeness to the care-giver was not ever reported, and in most interventions care-givers appeared to be professional rather than family care-givers (also see “Setting”).

5. Meaningful activity

• For people with dementia, what interventions aimed at improving or maintaining food and/or fluid intake, nutrition or hydration status, support meaningful activity (activity around food or drink that is personally fulfilling, that people enjoy, look forward to or find important)?

• For people with dementia, are there any interventions that decrease food or fluid intake, diminish enjoyment or quality of life, or diminish meaningful activity or social inclusion?

Few studies measured quality of life or happiness using a validated scale, but some reported improved autonomy, involvement and interest of participants. There were suggestions that music at dinnertime might improve psychological wellbeing (Ragneskog 1996), familiar lunchtime music might increase social engagement (Thomas 2009), family style meals with staff training might improve mealtime participation (Altus 2002), nutritional education for people with dementia and their spouses living at home might improve quality of life (Suominen 2013), reminiscence cooking might improve happiness and feelings of participation (Huang 2009), and a facilitated breakfast club improve interest and involvement (Santo Pietro 1998). Fingerfoods, verbal prompting and positive reinforcement, behavioural interventions (spaced retrieval and Montessori activities), adapted Tai-Chi and cognition action exercise may improve eating independence (Jean 1997, Coyne 1988, Van Ort 1995, Lin 2010, 2011, Dechamps 2010).

6. Individualised interventions

Do individualised interventions appear more effective than those that are not individualised, in helping people with dementia to maintain or improve food and/or drink intake, nutrition or hydration status (or related outcomes)?

Only a few interventions were individualised (Mentes 2003, Suominen 2007 and 2013, Kwok 2012, Huang 2009, Wu 2013, Rolland 2007, Beck 2010, Boffelli 2004 and Keller 2003), but these did not stand out as being more effective than others. One study directly compared a fixed intervention (spaced retrieval training combined with Montessori activities over 24 sessions) with an individualised approach (as the fixed intervention but with different sessions adapted to each participants learning response), and a control arm (Wu 2013). There were no clear differences between the arms: BMI improved in both fixed and individualised interventions, but depression was only reduced in the individualised arm.

7. Interventions in acute illness

Are there any interventions that are particularly effective in helping people with dementia to maintain or improve food and/or drink intake, nutrition or hydration status (or related outcomes) during periods of acute illness?

None of these interventions were assessed on people who were acutely ill.