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A Guide to Delivering Evidence Based Psychological Therapies and Interventions in Scotland

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Home Evidence Summaries Populations Requiring Special Considerations and Adjustments Dementia

Dementia

Dementia is a term used to describe a range of cognitive and behavioural symptoms that can include memory loss, problems with reasoning and communication, changes in personality, and a reduction in a person's ability to carry out daily activities, such as shopping, washing, dressing and cooking. The most common types of dementia are Alzheimer's disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia. It is also possible for people to be diagnosed with more than one type of dementia (e.g. Alzheimer’s and vascular) and the term mixed dementia may be used to describe such presentations (1). Dementia is a progressive condition which means that the symptoms will gradually get worse. This progression will vary from person to person, and each will experience dementia in a different way – people may often have some of the same general symptoms, but the degree to which these affect each person will vary (National Institute of Health and Care Excellence (NICE-42) (2).

As well as the cognitive impact, dementia has a physical, psychological, social, and economic impact for both people with dementia and their carers and families, and this presents challenges for society and healthcare systems (Scottish Intercollegiate Guidelines Network (SIGN)168) (3).Providing care and support is complex because of the number of people living with dementia and the variation in the symptoms each person faces. The need for services to be person centered yet to achieve consistency of provision is a difficult balance. Areas that pose challenges for services and practitioners may include:

  • coordinating care and support between different services
  • assessment and diagnosis
  • interventions and support for people living with dementia and their carers
  • what support carers need, and how this should be provided
  • staff training

Globally, the number of people living with dementia is anticipated to increase from 57 million in 2019 to 153 million in 2050, an increase of 168% (4). In the UK in 2015, around 850,000 people were estimated to be living with dementia, which is equivalent to 1 in 14 people over 65 years of age, or 1 in 79 of the whole population (5). An estimated 90,000 people are living with dementia in Scotland, including an estimated 3,000 individuals under the age of 65 (young-onset dementia). Within this population, around two-thirds of people with dementia live at home, with the remainder in acute or residential care. The latter accounts for at least 66% of the care home population in Scotland, and this proportion continues to increase. The estimated annual incidence of diagnosed dementia is approximately 20,000 (6).

This information is for commissioners, managers, trainers, and health care practitioners to consider the evidence base for the delivery of psychological interventions for people with dementia. This information is also for people diagnosed with dementia, their families, and carers.

Exclusions for topic: This topic does not cover pharmacological interventions or interventions which are not informed by psychological theory. There are a wider range of non-psychological interventions and supports that are beyond the scope of this topic and full guidance on best practice can be found in National Institute of Health and Care Excellence NICE 42 (2), and Scottish Intercollegiate Guidelines Network SIGN 168 (3).

Psychological interventions may be indicated for a range of symptoms occurring in the context of dementia, and the evidence relating to these areas is summarised below.

Psychological Interventions to Support Cognition

Psychosocial interventions, including those using physical, cognitive and social methods (7), have been found to be effective at improving global physical and cognitive functioning, social interaction, activities of daily life and quality of life for people with dementia. For cognitive outcomes, specifically, research identifies the positive effects of cognitive stimulation and cognitive rehabilitation.

A meta-analysis of randomised controlled trials (8) indicates that Cognitive Stimulation Therapy (CST) has a significant beneficial impact on global cognition, language, working memory, depression, distressed behaviour (reported as neuropsychiatric symptoms), communication, self-reported QoL and severity of dementia. Cognitive Stimulation Therapy (9) is a manualised intervention, comprising 14 group sessions, each 45-minute duration, delivered twice a week over a seven-week period. The CST protocol provides structured and stimulating activities in supportive group environments. Activities are designed to preserve existing skills by engaging various cognitive domains, such as memory, attention, language, and executive functions.

Cognitive Rehabilitation (CR) (10) is a personalised approach, based on a problem‐solving framework, which enables people with dementia to engage in, or manage everyday activities, function optimally, and maintain as much of their independence as possible. A systematic review indicates that CR is helpful in enabling people with mild or moderate dementia to improve their ability to manage the everyday activities targeted in the intervention (11).  Thus, assisting people with dementia to overcome some of the everyday barriers caused by cognitive and functional difficulties. Future research could help identify avenues to maximise CR effects and achieve wider impacts on functional ability and wellbeing.

In contrast to CST and CR, cognitive training showed less favourable results, with limited evidence of improvement in cognitive functioning (7).

Psychological Interventions for Depression

Cognitive behavioural therapy (CBT) and CBT-based interventions have the strongest evidence for psychological interventions for symptoms of depression in people with dementia and mild cognitive impairment. A systematic review of randomised controlled trials (12) compared cognitive behavioural therapy-based treatments (including behavioural activation, cognitive behavioural therapy, and problem-solving therapy) to treatment as usual or another active intervention. This indicated that CBT‐based treatments, plus usual care, slightly reduced symptoms of depression for people with dementia and mild cognitive impairment, and increased rates of remission of depression. 

Important factors that affected the results included the initial level of depression, diagnosis, and the content of the intervention. The review also showed a small positive effect on quality of life (QoL) and activities of daily living following CBT-based treatments. No adverse events were reported for any of the interventions.

A practice-based evidence study completed by NHS England Psychological Therapies Services (13) indicated that depression and anxiety scores in people with mild to moderate dementia significantly reduced over the course of psychological treatment (mostly CBT or CBT guided self-help) with large effect sizes. The difference between pre- and post-intervention in people with dementia did appear to be clinically meaningful. However, compared to a matched group without dementia, they were less likely to meet criteria for reliable improvement or recovery.

Psychological Interventions for Anxiety

The systematic review (12) evidence reported for depression discussed above showed uncertain results for anxiety, indicating only low-level evidence. There was evidence from small pilot studies, but this included some insignificant findings. A scoping meta review (14) including practice-based evidence highlighted that anxiety in dementia has been less frequently studied, and overall, there were no positive findings for people with dementia and anxiety using psychological interventions. Research in this area is limited by inconsistent definitions, with the terms stress and anxiety being used interchangeably, and a mix of clinical and non-clinical samples in and across studies.

Anxiety remains a common presenting symptom alongside dementia and practitioners are recommended to consider the Matrix evidence for anxiety in conjunction with the Delivering Effective Psychological Therapies and Interventions to Older People.

Psychological Interventions to address Insomnia

For people living with dementia, SIGN 168 (3) recommends a multicomponent approach to managing insomnia and sleep disturbances. This may include sleep hygiene education, regular exposure to daylight (but not bright light therapy), physical exercise, and personalised social activities. A recent systematic review (15) indicates some positive effects from interventions involving physical and social activities, carer-focused interventions, and multimodal approaches. However, evidence remains inconsistent and inconclusive, and no single or combined intervention has yet demonstrated clear or reliable improvements in sleep outcomes with sufficient certainty.
Insomnia is a common presenting symptom alongside dementia and practitioners are recommended to consider the Matrix evidence for Insomnia in conjunction with the Delivering Effective Psychological Therapies and Interventions to Older People.

Psychological Interventions to Support Mood and Wellbeing in Institutional Settings

The effects of reminiscence interventions, such as Reminiscence Therapy (RT) (16) have been inconsistent, with studies typically small in size, and differing across settings and modalities.  RT (16) has demonstrated some positive effects on QoL, cognition, communication, and mood in people with dementia. Recent meta-analyses suggest that RT can lead to meaningful improvements in psychological wellbeing among people living with dementia. In one review, RT was associated with a moderate reduction in depression, alongside small but significant reductions in both distressed behaviours and indications of stress measures. Small but significant improvements in QoL were also reported. Another meta-analysis of 29 studies (3,102 participants) (17) similarly reported that RT had a moderate positive effect on depression, with smaller but significant effects on reducing neuropsychiatric symptoms (distressed behaviour) and improving QoL.

Studies conducted in care homes show the widest range of benefits, including improvements in QoL, cognition and communication at follow‐up. However, the wide range of RT interventions across studies makes comparison and evaluation of relative benefits difficult.

Psychological interventions for distressed behaviour

National clinical guidelines, including SIGN 168 (3) and NICE 42 (2), recommend that non-pharmacological interventions for the behavioural and psychological symptoms of dementia, distressed behaviour, be considered prior to the administration of psychotropic medications. The Scottish Dementia Strategy (2023) states that “non-pharmacological interventions may improve cognition, social engagement and QoL and decrease stress and distress”.

For managing behavioural and psychological symptoms of dementia, distressed behaviour, in care homes guidelines including SIGN 168 (3) and NICE 42 (2) recommend multi-component programmes (18) that include staff training, managerial support for implementation, and interventions tailored to the needs of the person with dementia. In the first instance, a highly specialist and comprehensive assessment is recommended, and interventions should be formulation led, acknowledging the person with dementia’s preferences, skills and abilities.

The complexity of both behavioural and psychological symptoms of dementia, such as distressed behaviour, coupled with the variations in care environments across studies of psychosocial interventions, leads to a lack of robust findings on the efficacy of these interventions. However, there is a general consensus that formulation led interventions, usually based on a functional analysis (19) and tailored to the individual’s specific needs are best practice (SIGN 168 (3) and NICE 42) (2). The individualised interventions indicated by the formulation may include psychological interventions, as well as a range of interventions delivered by members across the multi-disciplinary care team.

The British Psychological Society (20) highlights a number of multi-component interventions that use personalised forms of care to prevent and de-escalate distressed behaviour. The Newcastle model, employed in the Focused Intervention Training and Support (21) (FITS) randomised control trial and subsequently implementated in care homes (22), is the most frequently used of 32 formulation models in a UK review of models (23). The NHS Education for Scotland Stress and Distress programme is also based on the Newcastle Model. Other evidence-based multi-component training programmes that promote wellbeing and improve carers’ skills are also highlighted, including Dementia Care Mapping (24), Well-being and Health for People Living with Dementia (WHELD) (25), and Positive Approaches to Care (26).

Strategies for addressing organisational barriers will be key to achieving the desired outcomes from any training delivered, given the persistence of such barriers to implementation in studies of multi-component intervention training within care homes and other institutional settings. Research (27) suggests implementing interventions with a clear evidence base; scaling up implementation following small scale testing; nationwide training programmes to train providers, and national endorsement of the intervention. This requires partnership working, funding, and educational strategies including ongoing support and consultation for clinicians.

In the review of the evidence above for RT (17) and CST (8), it should be noted that both interventions report positive outcomes for distressed behaviour and can be considered evidence-based elements of multi-component interventions.

Multi-component interventions based on formulation may include practices that are beyond the Matrix focus on psychological interventions, such as the therapeutic use of dolls (28-30) and simulated person therapy (31). The evidence base for these as stand-alone interventions is inconsistent, in part due to the lack of standardisation of the approaches. As part of a multi-component intervention based on a functional analysis these approaches may enhance and maintain the wellbeing of people with dementia rather than specifically addressing distressed behaviours.

Evidence is emerging for music-based therapy (32) as a component of formulation-based multi-component interventions. A systematic review showed that when compared to usual care, providing at least five sessions of a music-based therapeutic intervention likely improves depressive symptoms, and may improve distressed behaviour at the end of treatment.

In summary, the evidence is emerging and seems to suggest that a combination of an assessment based on a functional analysis and individually tailored interventions, with particular emphasis on the training of care staff as the agents of change, is effective.

Psychological interventions to support caregivers of people with dementia and distressed behaviour

A systematic review of psychological interventions (33) involving people with dementia and their carers have some promise but are still far from uniformly effective across distressed behaviour, QoL, and caregiver burden.

Approaches that show promise in supporting carers to manage the distressed behaviour of the person living with dementia are those based on health stress models, in which the goal is to change the nature of specific stressors (e.g. a particular distressed behaviour of the person living with dementia), the caregiver’s  appraisal of the behaviour, and/or the caregivers’ response to the stressors (20). There are good quality studies in this area including REACH (Resources for Enhancing Alzheimer’s Caregiver Health) (34); COPE (Care of Persons with Dementia in their Environments (35)) and TAP (Tailored Activity Program (36)). Most of these interventions involve delivering 8–15 training/contact sessions helping family members to identify difficulties and to understand and remedy potential causes. These interventions have a ‘problem-solving’ approach through which family members learn to assess the situation and produce tailored management strategies. These approaches are not generally based on a detailed formulation (18).

Psychological Interventions to support Coping, Loss and Adjustment in Caregivers

There is good quality evidence to suggest that CBT, delivered in groups or one to one, is effective in addressing depression and subjective caregiver burden (37-39).

Psychoeducation programmes that teach caregivers adaptive skills for coping with caregiving demands and stress using a structured format (more straightforward information giving and supportive psychoeducational approaches were beyond the scope of this review), often including a CBT or problem-solving component (e.g. the Strategies for Relatives intervention) (40,41), have been shown to be effective in reducing anxiety and depression. Effects are maintained at two- to six- year follow-up (42), and are cost effective (43). 

Other interventions have promising emerging evidence, but it is not yet sufficient for a recommendation. This includes mindfulness (44-47) based interventions and Acceptance and Commitment (48,49) Therapy.

There is evidence (50) that carers of people living with dementia can experience loss and grief reactions, and that intervention strategies that directly target grief and loss may be helpful to consider. A CBT-based intervention (51) including a grief model reduced carer burden in one large randomised trial. A number of smaller studies (52-54) based on different grief models have demonstrated the feasibility and potential for grief interventions in reducing carer burden and guilt.

Overview of Evidence for Harms and Adverse Effects

Like all treatments, psychological therapies and interventions also have the potential to have adverse effects. Until recently, information on potential harms and rates of adverse effects have not been gathered systematically (see information relating to safety in the delivery of psychological therapies). Although reports of adverse effects are increasingly included in research trials (as in the review of CBT based treatments for depression (12) discussed above) and gathered as part of service provision we do not know if psychological interventions cause more, fewer or similar numbers of adverse effects than no treatment or another treatment, because the evidence in this area is of very low quality at present.

Recommendation Who for? List of Interventions Type of psychological practice Evidence Efficacy
First line recommendation People with Dementia and Depression CBT and CBT-based interventions (12) enhanced/specialist A Low
  People with Dementia - Supporting Cognition (mild to moderate dementia)

CST (55,56)

Cognitive Rehabilitation (8)

Enhanced/specialist

Enhanced/Specialist

A

A

Low to Medium
  People with Dementia in Institutional Settings - Mood and Wellbeing Reminiscence Therapy (16) Enhanced, specialist A Low
  People with Dementia -distressed behaviour
Multi-component interventions based on Functional Analysis and individual formulation
e.g. FITS (21,22), DCM (24), PAC (26)
Enhanced, specialist A Low
  Psychosocial interventions focused on loss, coping and adjustment for carers of people with dementia
CBT (37-39)
(individual, group)
CBT focused on pre-death grief (51)
Psychoeducation Programmes - with CBT or Problem-solving components
(e.g. START (40))
enhanced/specialist
A
A
 
  Carers of people with dementia - Distressed Behaviour Approaches based on health stress model that include problem solving e.g. COPE (35), REACH (34), TAP (36) Enhanced/Specialist A Low

Advisory Group – Heads of Older People Psychology Services acted in this role

Technical Group – Marie Claire Shankland, Sue Turnball, David Gritner, with thanks to Stephanie Crawford and colleagues.

1.ICD-11.

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56.Desai R., Leung W.G., Fearn C., John A., Stott J., Spector A. Effectiveness of Cognitive Stimulation Therapy (CST) for mild to moderate dementia: A systematic literature review and meta-analysis of randomised control trials using the original CST protocol. Ageing Research Reviews 2024;97(pagination):Article Number: 102312. Date of Publication: 01 Jun 2024.