Introduction
What are psychosocial interventions for dementia?
Psychosocial intervention is a broad term that encompasses many different types of support options available to people living with dementia and/or their families. These interventions aim to help people to manage and live well with a diagnosis of dementia. Health and social care practitioners providing psychosocial interventions may be especially interested in this section of the toolkit.
What is the focus of this section of the toolkit?
Psychosocial interventions have largely been developed either in westernised countries and/or have been studied using predominately white participants. The focus of this section of the toolkit is to identify psychosocial interventions that have either been developed and tested solely for people from South Asian communities and/or existing interventions that have been culturally adapted for people from South Asian communities.
How have we identified these resources?
We have identified the resources listed here through a three-step process. Firstly, we looked at what had already been published in the area in order to learn what the key issues were. Next, we presented descriptions of the interventions we found in discussions with a range of people: formal and informal carers of people living with dementia; volunteers and staff working in community organisations; and healthcare professionals. This was with a view to exploring their thoughts about the interventions. Feedback from these workshops participants suggested that people prefer face-to-face rather than digital/online interventions. Finally, we carefully reviewed the research behind the interventions to gain a greater understanding of how effective they were.
We found that interventions in this field are in their infancy. More work is needed on developing culturally appropriate interventions and for these to be evaluated using robust methods to improve the evidence base.
How to use this area of the toolkit?
This part of the toolkit has been divided into two sections.
- The first details interventions suitable for people living with dementia.
- The second focuses on interventions suitable for families supporting someone living with dementia. Each section is divided into two sub-sections: interventions developed in the UK; and interventions developed in south Asian countries. We provide a short description of each intervention and a summary of the findings from research evidence available.
This section highlights programmes that have a good evidence base. They have been conducted in geographically specific areas and may not always be available in your area.
Section 1: Interventions for people living with dementia
Interventions developed in the UK
A Punjabi adaptation of Cognitive Stimulation Therapy (CST)
Where was this intervention developed?
In the Slough Memory Service, UK
What does the intervention involve?
Cognitive Stimulation Therapy is an evidenced-based group intervention which typically runs twice a week across 14 or more sessions of themed activities, focusing on topics such as foods, music, word and number games. In the Slough Memory Service, staff have adapted the sessions to be more culturally appropriate and relevant to the Punjabi-speaking community (for example, the inclusion of brewing Masala tea and listening to Indian music). This is the only psychosocial intervention recommended by NICE.
What is the research underpinning this intervention?
Sharma S and Scott I (2016) Collaborating with service users to form a culturally tailored intervention: Punjabi Cognitive Stimulation. FPOP Bulletin 133; 32-38.
This paper provides reflections on the differences between the English and Punjabi versions of the CST groups. These were led by Punjabi-speaking staff. Punjabi service users suggested the adaptations to the intervention. To our knowledge, no formal evaluation of the adaptations has been published.
https://www.ucl.ac.uk/international-cognitive-stimulation-therapy
Interventions developed in SOUTH ASIAN COUNTRIES
A Tamil adaptation of Cognitive Stimulation Therapy
Where was this intervention developed?
In Chennai, India
What does the intervention involve?
Cognitive Stimulation Therapy is an evidenced-based group intervention which typically runs twice a week across 14 or more sessions of themed activities, focusing on such topics as food, music word and number games. The inclusion of the traditional counting game Pallanguzhi is one example of a cultural adaptation.
What is the research underpinning this intervention?
A small study with nine participants provides some evidence that participants found this cultural adaptation of CST acceptable. CST is widely used in the UK and is recommended in the NICE guidance (guidelines for health and social care, detailing the most suitable services for people with particular health conditions). There is a growing body of literature cited on the main CST website about international adaptations of CST.
https://www.ucl.ac.uk/international-cognitive-stimulation-therapy/
Section 2: Interventions for families living with dementia
Interventions developed in the UK
1. Information programme for south Asian families (IPSAF)
Where was this intervention developed?
Across nine sites in England, UK
What does the intervention involve?
A culturally adapted version of a programme initially developed and delivered by the Alzheimer’s Society. The programme consists of four sessions dealing with:
- Understanding dementia;
- Legal and money matters;
- Looking after people living with dementia;
- Looking after oneself.
What is the research underpinning this intervention?
Parveen, S., Blakey, H., & Oyebode, J. R. (2018). Evaluation of a carers’ information programme culturally adapted for South Asian families. International Journal of Geriatric Psychiatry, 33(2), 199-204
An evaluation conducted in seven of the sites concludes that the programme impacts on participants in the following ways:
- Improved knowledge about dementia and support services available;
- Provided peer support which enhanced confidence among family carers;
- Improved the lives of people living with dementia as family carers provided more effective care;
- Extended information about dementia into wider community as family carers passed it on.
2. Urdu adaptation of the STrAtegies for RelaTives (START) intervention
Where was this intervention developed?
In London and Essex, UK
What does the intervention involve?
This is an eight-week intervention offered to family carers on a one-to-one basis. The intervention enhances skills in relaxation, managing behaviours and unhelpful thoughts, and communication and planning for the future. The materials have been adapted into Urdu.
What is the research underpinning this intervention?
An evaluation of the original version of START identifies reductions in depression and anxiety, as well as improvements in quality of life for family carers.
The Urdu version of START is available for use, and a project is currently underway to evaluate the adaptation for delivery in South Asian communities and the voluntary sector.
There has been much research on the START intervention. Please consult the project webpage for more published research and materials.
https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start/publications
Interventions developed in SOUTH ASIAN COUNTRIES
1. Cognitive Behavioural Therapy for family carers of people with dementia
Where was this intervention developed?
In Lahore, Pakistan
What does the intervention involve?
Cognitive Behavioural Therapy (CBT) is an evidenced-based intervention focusing on a range of mental health conditions. The aim is to reduce family carers’ feelings of burden and anger, and to improve physical and mental health.
Family carers receive ten 45-minute sessions of CBT provided in a clinic over a five to eight week period, including homework assignments in between sessions. Sessions focus on topics such as relaxation, stress and anger management, assertiveness, sleep hygiene, time management, and enhancing physical wellbeing.
What is the research underpinning this intervention?
Ali, S., & Bokharey, I. Z. (2015). Efficacy of cognitive behavior therapy among caregivers of dementia: an outcome study. Pakistan Journal of Psychological Research, 30(2)249-269.
A small study with eight family carers reports reductions in family carers’ burden and anger, as well as improvements in their physical and mental health. Family carers responded particularly well to advice about nutrition, relaxation and anger management techniques, and guidance on how to improve social network support.
2. The Home Care Programme: supporting family carers of people living with dementia
Where was this intervention developed?
In Goa, India
What does the intervention involve?
The intervention aims to reduce family carer burden, promoting mental health, and to reduce behavioural issues in the person living with dementia. Home Care Advisors applied a flexible home-care programme tailored to the needs of family carers. This support included basic information and advice about dementia, about common behavioural challenges and how they can be managed, and about how to form peer-support groups.
What is the research underpinning this intervention?
Dias, A., et al (2008). The effectiveness of a home care program for supporting caregivers of persons with dementia in developing countries: a randomised controlled trial from Goa, India. PloS one, 3(6), e2333. Published June 2008, an open access article
Overall, family carers who were part of the Home Care programme showed significant improvements in mental health and perceived burden compared to those not offered the programme. People living with dementia who were part of the programme showed some reductions in behavioural problems and some improvements in their daily functioning ability.
3. A customised meditation/yoga programme
Where was this intervention developed?
In Mumbai, India and Kathmandu, Nepal
What does the intervention involve?
The programme aims to promote relaxation, awareness, and physical and emotional well-being.
Family carers attend a 45-minute weekly meditation lesson led by an experienced instructor. The lessons involve exercises in yogic postures, relaxation and breathing techniques. Family carers are encouraged to practice the exercises and postures at home between lessons.
What is the research underpinning this intervention?
Pandya, S. P. (2019). Meditation program enhances self-efficacy and resilience of home-based caregivers of older adults with Alzheimer’s: A five-year follow-up study in two South Asian cities. Journal of gerontological social work, 62(6), 663-681 (published on 17th July 2019)
This large five-year study reports that family carers who took part in the intervention reported reduced care-related burden and improved resilience in their caring role. Improvements arising from this intervention were more apparent in participants who attended at least 75% of the weekly sessions and who regularly practised the exercises during the five year study.