ReviewPersonalized dementia care: Proven effectiveness of psychosocial interventions in subgroups
Introduction
The number of people who are over 65 years of age and diagnosed with dementia will rise over the next decades. It is estimated that 7.3 million people in Europe (Alzheimer Europe, 2009) and 24.3 million people worldwide have dementia today, and that the number of people affected will almost double every 20 years to 42.3 million in 2020 and 81.1 million people in 2040 (Ferri et al., 2005). This growth will put a major claim on health care services, especially the diagnostic, therapeutic, and preventative health care services provided for individuals in the community, as well as on welfare services that aim to socially support these persons and their carers. Persons with dementia need a lot of care and the main problem here is that the amount of available care is not expected to grow at the same rate as the expected increase of people with dementia.
In a recent large survey, persons with dementia reported unmet needs most frequently in domains of information about their health and available care and welfare services, memory support, company and psychological distress (Van der Roest et al., 2009a). Reasons for not using the available care and welfare services are that persons with dementia and their caregivers are often unaware of the care offerings available to them, they find it difficult to choose between all the different care services and therefore tend not to use them, have negative experiences with the care received because it does not fit their specific situation or wishes, or they anticipate that the service offer will not meet their needs (Van der Roest et al., 2009b).
Unmet needs can lead to many negative outcomes such as mood and behavioural problems, unsafe situations, social isolation and higher mortality for patients (Gaugler et al., 2005).
To be able to provide people with dementia with the appropriate care, the offer of available care and welfare services should be optimally tailored to the specific individual needs of persons with dementia. We therefore recommend more detailed investigation of the effectiveness of care interventions for subgroups. The findings could also benefit healthcare professionals who offer care to people with dementia, as they will gain more insight into the effectiveness of different psychosocial interventions for subgroups of people with dementia. Many reviews in the past (e.g. Eggermont and Scherder, 2006, Livingston et al., 2005, Smits et al., 2007) have tried to give an overview of effective psychosocial interventions, but failed to systematically provide information concerning characteristics of the subgroups for which those interventions have proven to be beneficial in particular. This information is important for professional health carers to be able to provide advice or effective care that is attuned to the needs of their individual clients.
The aim of this study is to identify which personal and contextual features (characteristics) are relevant to promote a more effective and efficient use of care and welfare services for subgroups of persons with dementia. This is expected to result in people with dementia making more efficient and successful use of care services. With this study, we will provide a unique and comprehensive overview of personal characteristics that are related to positive outcomes of psychosocial interventions. Examples of personal characteristics and contextual factors that may be related to effective care are: severity and type of dementia, and availability of caregivers.
To gain insight into characteristics that are related to effective intervention outcomes this literature review focuses on the following research question:
Which specific characteristics of persons with dementia or their situations are related to positive outcomes of individual care and welfare interventions?
Section snippets
Literature search procedure
To find out which personal characteristics of persons with dementia are related to predictors of effective care and support interventions we performed a literature study. This study was limited to non-pharmacological interventions.
We started by searching the electronic databases of PubMed, PsycINFO and Cinahl. The inclusion criteria were studies that report on the effectiveness of care and welfare services used by people with dementia, as well as on the relation between outcomes and personal
Outcome measures
Characteristics of community-dwelling people with dementia, institutionalized people with dementia and positive effects on outcome measures were described. Because effect sizes were often not mentioned in the traced articles, we decided to not include these in the tables. For each subgroup several different categories of outcome measures were distinguished. The interventions for people with dementia were divided into community-based and institution-based interventions. The interventions under
Conclusion and discussion
In this study we tried to gain more insight into the characteristics of people with dementia that may predict positive effects of individual care and welfare interventions. We traced 76 studies that reported on the effectiveness of care and welfare interventions within subgroups of people with dementia.
We found different personal contextual characteristics of people with dementia to be related to positive outcomes of interventions. For people with dementia, regardless of whether they are living
References (77)
- et al.
Global prevalence of dementia: a Delphi consensus study
Lancet
(2005) - et al.
Effects of individualized music on confused and agitated elderly patients
Arch. Psychiatr. Nurs.
(1993) A walking program for wanderers: volunteer training and development of an evening walker's group
Geriatr. Nurs.
(1997)- et al.
The effect of expressive physical touch on patients with dementia
Int. J. Nurs. Stud.
(1999) - et al.
Effect of bright light treatment on agitated behavior in institutionalized elderly subjects
Psychiatry Res.
(1995) Student-led exercise sessions yield significant fitness gains for Alzheimer's patients
Am. J. Alzheimers Dis. Other Demen.
(2003)- et al.
A group for “wandering” institutionalized clients with primary degenerative dementia
Perspect. Psychiatr. Care
(1994) - et al.
A randomized controlled trial of the effects of multi-sensory stimulation (MSS) for people with dementia
Br. J. Clin. Psychol.
(2001) - et al.
Quality of life for people with dementia living in residential and nursing home care: the impact of performance on activities of daily living, behavioral and psychological symptoms, language skills, and psychotropic drugs
Int. Psychogeriatr.
(2001) - et al.
Special care units for demented patients: a multicenter study
Gerontologist
(1998)
An Italian model of dementia special care unit: results of a pilot study
Alzheimer Dis. Assoc. Disord.
Improving the nutritional status of people with dementia
Br. J. Nurs.
Enhancing conversation skills in patients with Alzheimer's disease using a prosthetic memory aid
J. Appl. Behav. Anal.
Modifying repetitive verbalizations of community-dwelling patients with AD
Gerontologist
The Prince Henry Hospital dementia caregivers’ training programme
Int. J. Geriatr. Psychiatry
Well-being and activity in dementia: a comparison of group reminiscence therapy, structured goal-directed group activity and unstructured time
Aging Ment. Health
Therapeutic recreation as an intervention for persons with dementia and agitation: an efficacy study
Am. J. Alzheimers Dis. Other Demen.
Evaluation of simulated presence: a personalized approach to enhance well-being in persons with Alzheimer's disease
J. Am. Geriatr. Soc.
The effect of music on repetitive disruptive vocalizations of persons with dementia
Am. J. Occup. Ther.
Using a therapy dog to alleviate the agitation and desocialization of people with Alzheimer's disease
J. Psychosoc. Nurs. Ment. Health Serv.
Intervening with everyday memory problems in dementia of Alzheimer type: an errorless learning approach
J. Clin. Exp. Neuropsychol.
Use of music to decrease aggressive behaviors in people with dementia
J. Gerontol. Nurs.
Decreasing aggressive, agitated or disruptive behavior: participation in a behavior management unit
J. Gerontol. Nurs.
Effect of Meeting Centres Support Programme on feeling of competence of family caregivers and delay of institutionalization of people with dementia. Variations in meeting centers for people with dementia and their caregivers. Results of a multi-center implementation study
Aging Ment. Health
Effect of combined support for people with dementia and carers versus regular day care on behavior and mood of persons with dementia: results from a multi-centre implementation study
Int. J. Geriatr. Psychiatry
Animal-assisted therapy and Nutrition in Alzheimer's disease
West. J. Nurs. Res.
Physical activity and behaviour in dementia
Dementia
The effects of regular exercise on muscle strength and functional abilities of late stage Alzheimer's residents
Am. J. Alzheimers Dis. Other Demen.
Therapeutic recreation interventions for need-driven dementia-compromised behaviors in community-dwelling elders
Am. J. Alzheimers Dis. Other Demen.
Association with companion animals and the expression of noncognitive symptoms in Alzheimer's patients
J. Nerv. Ment. Dis.
Unmet care needs and key outcomes in dementia
JAGS
Effects of individualized versus classical “’relaxation” music on the frequency of agitation in elderly persons with Alzheimer's disease and related disorders
Int. Psychogeriatr.
What can reminiscence contribute to people with dementia?
The impact of reminiscence groups in two different settings
Int. J. Geriatr. Psychiatry
The outcomes of an inpatient treatment program for geriatric patients with dementia and dysfunctional behaviors
Gerontologist
Effect of snoezelen on the behavior of demented elderly
Tijdschr. Gerontol. Geriatr.
The effects of a psychomotor activation programme for use in groups of cognitively impaired people in homes for the elderly
Int. J. Geriatr. Psychiatry
A pilot study on a home-based caregiver training program for improving caregiver self-efficacy and decreasing the behavioral problems of elders with dementia in Taiwan
Int. J. Geriatr. Psychiatry
Cited by (60)
Evolving Fuzzy logic Systems for creative personalized Socially Assistive Robots
2022, Engineering Applications of Artificial IntelligenceCitation Excerpt :To ensure the effectiveness of the implemented therapies, the behavior of SARs must be personalized to individual patients (Ascensão and Jamshidnejad, 2022; Abdi et al., 2018; Sabanovic et al., 2013). Personalization can take place either during individual therapeutic sessions (short-term personalization (Tsiakas et al., 2018)) via adaptation of the difficulty and type of tasks proposed to patients based on their capabilities and personality (Syriopoulou-Delli and Gkiolnta, 2022; Abdi et al., 2018; Sabanovic et al., 2013; Ramachandran et al., 2018), or over the course of multiple sessions (long-term personalization), by explicitly accounting for the (evolving) cultural and social background of patients (Van Mierlo et al., 2010; Epp, 2003) and by regularly and creatively stimulating patients to explore new activities so to preserve their divergent thinking and cognitive capacities (Palmiero et al., 2012; Liberati et al., 2012; Hannemann, 2006). While a large corpus of solutions for short-term personalization of SARs exists in the literature, only few works report on long-term personalization and decision-making of SARs (Moro et al., 2018; Umbrico et al., 2020; Rossi et al., 2017).
Living with dementia and caregiving: Psychosocial considerations through the gender lens
2021, Sex and Gender Differences in Alzheimer’s DiseaseInterventions aimed to increase independence and well-being in patients with Alzheimer's disease: Review of some interventions in the Italian context
2018, Neurology Psychiatry and Brain ResearchCitation Excerpt :The CG is trained in effective supervision skills, problem solving, and coping strategies, and receives practical and emotional support in order to sustain both their own autonomy and social participation as well as that of the PWD. Evidence from the COTiD program indicated that both PWD and their CGs showed improved functionality in their daily activities, and in terms of the CG’s sense of competency, and the mood, quality of life, and health-status of both the patients and their CGs; thus, every successful treatment also resulted in a cost saving in relation to [pharamaceutical internetions/the delayed decline of patients…] (De Coninck et al., 2017; Döpp et al., 2011; Graff et al., 2009; Graff et al., 2008; Graff et al., 2006; Spijker et al., 2008; Van Mierlo et al., 2010). Furthermore, a recent multi-center, parallel-group, pragmatic randomized trial performed in UK showed that COTiD is a valuable evidence-based person-centered intervention that reflects the current priority of enabling PWD to remain in their own homes by improving their capabilities whilst reducing the burdens of CGs (Wenborn et al., 2016).
Does Cognitive Impairment and Agitation in Dementia Influence Intervention Effectiveness? Findings From a Cluster-Randomized-Controlled Trial With the Therapeutic Robot, PARO
2018, Journal of the American Medical Directors Association