Dementia resources

Further reading

Person-centred approach

• Brooker, D. (2007) Person-centred dementia care: making services better. London, Jessica Kingsley Publishers.
• Calia, C., Johnson, H., Cristea, M. (2019) ‘Cross-cultural representations of dementia: an exploratory study’ Journal of Global Health. 9 (1), 1-11. Available at: https://doi.org/doi:%2010.7189/jogh.09.011001
• Kitwood, T. (1997) Dementia Reconsidered: the person comes first. Oxford, Open University Press.
• May, H., Edwards, P., Brooker, D. (2009) Enriched care planning for people with dementia. London, Jessica Kingsley Publishers.

Case history and assessment

• Alzheimer Europe and National Health Service England (2023)
• NHS England (2003), Intercultural dementia care: a guide for health and care workers. Available at: https://www.england.nhs.uk/wp-content/uploads/2023/05/intercultural-dementia-care-guide.pdf
• Volkmer, A. (2013) Assessment and therapy for language and cognitive communication difficulties in dementia and other progressive diseases. Guilford, J and R Press Limited.

Primary Progressive Aphasia

• Gorno-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Cappa, S. F., Grossman, M. (2011) ‘Classification of primary progressive aphasia and its variants’, Neurology. 76 (11), 1006-1014.  Available at: https://doi.org/10.1212/WNL.0b013e31821103e6
• Hardy, C. J., Taylor‐Rubin, C., Taylor, B., Harding, E., Gonzalez, A. S., Jiang, J., Warren, J. D. (2023) ‘Symptom‐led staging for semantic and non‐fluent/agrammatic variants of primary progressive aphasia’, Alzheimer’s and Dementia. Available at:  https://doi.org/10.1101/2023.03.13.23286972
• Marshall, C. R., Hardy, C. J., Volkmer, A., Russell, L. L., Bond, R. L., Fletcher, P. D., Warren, J. D. (2018) ‘Primary progressive aphasia: a clinical approach’, Journal of neurology. 265 (6), 1474-1490. Available at: https://doi.org/10.1007/s00415-018-8762-6
• Suárez-Gonzáles, A., Cassani, A., Gopalan, R., Scott, J., Savage, S. (2021) ‘When it is not primary progressive aphasia: A scoping review of spoken language impairment in other neurodegenerative dementias’, Translational Research and Clinical Interventions. 7 (1) Available at: https://doi.org/10.1002/trc2.12205
• Volkmer, A., Rogalski, E., Henry, M., Taylor-Rubin, C., Ruggero, L., Khayum, R., Rohrer, J. D. (2020) ‘Speech and language therapy approaches to managing primary progressive aphasia’, Practical neurology. 20 (2), 154-161. Available at: http://dx.doi.org/10.1136/practneurol-2018-001921
• Volkmer, A (2013) Assessment and therapy for language and cognitive communication difficulties in dementia and other progressive diseases. Guilford, J and R Press Limited.

Eating, drinking and swallowing

• Alwood, R. (2022) Working with communication and swallowing difficulties in older adults. Routledge.
• Kindell, J. (2002) Feeding and Swallowing Disorders in Dementia. Routledge. Available at: https://doi.org/10.4324/9781315170947
• Lee, K., Bartlett, R. (2021) Material Citizenship: An ethnographic study exploring object-person relations in the context of people with dementia in care homes’ Sociology of Health and Illness. 43 (6),1471-1485. Available at: ‘https://doi.org/10.1111/1467-9566.13321
• Leslie, P., Crawford, H. (2017) The concise guide to decision making and ethics in dysphagia. Guilford, J and R Press Limited.
• O’Keefe, S.T., et al. (2023) ‘Informed or misinformed consent and use of modified texture diets in dysphagia’, BMC Medical Ethics. 24 (7).  Available at: ‘https://doi.org/10.1186/s12910-023-00885-1

Sensory changes

• Dementia and Sensory Challenges Agnes Houston (2017), Life Changes Trust
• Dementia and sensory loss Social Care Institute for excellence 

Brain health/dementia prevention

• NHS England (2014) Five Year Forward View (england.nhs.uk)
• Livingston, G., et al. (2020) ‘Dementia prevention, intervention, and care: 2020 report for the Lancet commission’ The Lancet. 396 (10248), 413-446. Available at: https://doi.org/10.1016/S0140-6736(20)30367-6
• Valensuela, M., Sachdev, P. (2006) ‘Brain reserve and cognitive decline: a non parametric systematic review’, Psychological medicine. 36 (8), 1065-1073. Available at: https://doi.org/doi:10.1017/S0033291706007744

Compensatory approaches to communication

• Hoel, V., Mendom Feunou, C., Wolf-Ostermann, K. (2021) ‘Technology-driven solutions to prompt conversation, aid communication and support interaction for people with dementia and their caregivers: a systematic literature review’, BMC Geriatrics. 21(15). Available at: https://doi.org/10.1186/s12877-021-02105-0
• May, A.A., Dada, S., Murray, J. (2019) ‘Review of AAC interventions in persons with dementia’, International Journal of Language & Communication Disorders. 54 (6), 857-874. Available at: https://doi.org/10.1111/1460-6984.12491

Impairment-based approaches to communication

• National institute for health and clinical excellence and the social care institute for excellence (2006) Dementia:  Supporting people with dementia and their carers in health and social care.  Clinical guideline 42. NICE/SCIE, London
• Spector, A. et al. (2003) ‘Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia’, British Journal of Psychiatry, 183(3), pp. 248–254. Available at: https:org/10.1192/bjp.183.3.248
• Woods, B., Rai, H. K., Elliott, E., Aguirre, E., Orrell, M., and Spector, A. (2023) Cognitive stimulation to improve cognitive functioning in people with dementia’, Cochrane Database of Systematic Reviews. Available at: ‘https://doi.org/10.1002/14651858.CD005562.pub3

Education, training and empowering others

• Allwood, R., Pilnick, A., O’Brien, R., Goldberg, S., Harwood, R., Beeke, S. (2017) ‘Should I stay or should I go? How healthcare professionals close encounters with people with dementia in the acute hospital setting’, Social Science and Medicine. 191 (10,2017) 212-225. Available at: https://doi.org/10.1016/j.socscimed.2017.09.014
• Beeke, S., Volkmer, A., Farrington-Douglas, C. (2021) ‘TeleCPT: Delivery of a Better Conversations approach to Communication Partner Training during a global pandemic and beyond’ Perspectives of the ASHA Special Interest Groups. 6 (6), 1776-1785.  Available at: https://doi.org/10.1044/2021_PERSP-21-00160
• Chatwin, J., Ludwin, K., Latham, I. (2022) ‘Combining ethnography and conversation analysis to explore interaction in dementia care settings’, Health Expectations. 25 (5), 2306-2313. Available at: https://doi.org/10.1111/hex.13563
• Perkins, L., Felstead, C., Scott, J., Spector, A. (2022) ‘Communication training programmes for informal caregivers of people living with dementia: A systematic review’, Journal of Clinical Nursing. 31 (19-20), 2737-2753. Available at: ‘https://doi.org/10.1111/jocn.16175
• Schuh, B. (2022) Communication Beyond Words: Adapative Interaction and Dementia. Available at : https://www.beingpatient.com/adaptive-interaction-ellis/
• Volkmer, A., Walton, H., Swinburn, K., Spector, A., Warren, J. D., Beeke, S. (2023) ‘Results from a randomised controlled pilot study of the Better Conversations with Primary Progressive Aphasia (BCPPA) communication partner training program for people with PPA and their communication partners’, Pilot and Feasibility Studies. 9 (1), 87.  Available at: https://doi.org/10.1186/s40814-023-01301-6
• Volkmer, A., Farrington-Douglas, C., Crutch, S., Beeke, S., Warren, J., Yong, K. (2022) ‘Better conversations: a language and communication intervention for aphasia in posterior cortical atrophy’, Neurocase. 28 (4), 356-363. Available at:  https://doi.org/10.1080/13554794.2022.2125326
• Volkmer, A., Spector, A., Swinburn, K., Warren, J. D., Beeke, S. (2021) ‘Using the Medical Research Council framework and public involvement in the development of a communication partner training intervention for people with primary progressive aphasia (PPA): Better Conversations with PPA’, BMC geriatrics. 21, 1-17.  Available at: https://doi.org/10.1186/s12877-021-02561-8
• Volkmer, A., Spector, A., Meitanis, V., Warren, J.D., Beeke, S. (2020) ‘Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: a systematic review’, Aging & Mental Health. 24 (9), 1381-1393. Available at: https://doi.org/10.1080/13607863.2019.1617246

Dementia and learning disabilities

• SCIE guidance https://www.scie.org.uk/dementia/living-with-dementia/learning-disabilities/ 
• Alzheimer’s Society guidance – dementia and learning disability https://www.alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia 
• Alzheimer’s Society guidance – dementia and Down Syndrome https://www.alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/downs-syndrome#content-start 
• Dementia UK guidance https://www.dementiauk.org/get-support/living-with-dementia/learning-disabilities-and-dementia/ 
• NICE Guideline NG54 https://www.nice.org.uk/guidance/ng54 

Decision making and mental capacity

• Act, M. C. (2005). Mental capacity act. London, The Stationery Office.
• Dening, K. H., King, M., Jones, L., Sampson, E. L. (2017) ‘Healthcare decision-making: past present and future, in light of a diagnosis of dementia’, International Journal of Palliative Nursing. 23 (1), 4-11.  Available at: https://doi.org/10.12968/ijpn.2017.23.1.4
• Murphy, J., Oliver, T. (2012) ‘The use of Talking Mats to support people with dementia and their carers to make decisions together’, Health and Social Care in the Community. 21 (2), 171-180. Available at: https://doi.org/10.1111/hsc.12005

Legislation and policy

England

• Gov.uk – ‘Challenge on Dementia 2020: Implementation Plan’ (2016) Available at: https://www.gov.uk/government/publications/challenge-on-dementia-2020-implementation-plan
• Gov.uk, ‘Joint declaration on post-diagnostic dementia care and support’ (2016) Available at: https://www.gov.uk/government/publications/dementia-post-diagnostic-care-and-support/dementia-post-diagnostic-care-and-support
• Gov.uk, The Care Act 2014  Available at: https://www.legislation.gov.uk/ukpga/2014/23/contents/enacted

Scotland

• Scottish Government ‘Dementia strategy’ (2023)
• Scottish Government ‘Realistic Medicine – Doing the right thing: Chief Medical Officer annual report’ (2022 to 2023)
• Alzheimer Scotland, The Scottish Dementia Research Consortium and Brain Health Scotland, ‘Scottish Brain Health and Dementia Research Strategy’ (2021)
• Alzheimer’s Scotland and Scottish Government, ‘Connecting People, Connecting Support’ (2017)
• Scottish Government, ‘Palliative and end of life care: strategic framework for action’ (2015)

Wales

• Welsh Government, ‘Digital Health and Social Care Strategy for Wales’(2023)
• Welsh Government, ‘Dementia Action Plan 2018-2022’
• Welsh Government ‘Dementia Action Plan: Strengthening provision in response to COVID 19’ (2021)
• Welsh Government ‘Transforming and modernising planned care and reducing NHS waiting lists’ (2022)
• Welsh Government ‘Allied Health Professionals Dementia Framework for Wales’ (2022)
• Public Health Wales ‘Dementia friendly hospital charter for Wales’ (2022)
• Welsh Government ‘Health and Social Care in Wales – COVID 19: Looking forward’ (2021)
• Welsh Government ‘Age Friendly Wales: our strategy for an ageing society’ (2021)
• Welsh Government ‘Outpatient services strategy and action plan 2020 to 2023’
• Welsh Government ‘Healthy weight strategy (Healthy Weight Healthy Wales)’ (2019. Updated 2023)
• Welsh Government ‘Allied Health Professions Framework for Wales: looking forward together’ (2020)
• Welsh Government ‘A Healthier Wales: long term plan for health and social care’ (2018)
• Welsh Government ‘Imaging services for disease diagnosis’ (2018)
• Welsh Parliament ‘Health Committee Inquiry on the use of antipsychotics in care homes’ (2017)
• Welsh Government ‘Suicide and self harm prevention strategy 2015 to 2022’

Northern Ireland

• Northern Ireland Department of Health ‘AHP Research and Innovation Strategy Northern Ireland’ (2023)
• Northern Ireland Department of Health ‘Domiciliary Care Workforce Review Northern Ireland 2016 – 2021’
• Northern Ireland Department of Health ‘Service Framework for Older People’ (2014)
• Northern Ireland Department of Health ‘Promoting Good Nutrition strategy and guidance’ (2013. Updated 2021)
• Northern Ireland Department of Health ‘Living with Long Term Conditions’ (2012)
• Northern Ireland Department of Health ‘Improving Dementia Services in Northern Ireland: A Regional Strategy’ (2011)
• Northern Ireland Department of Health ‘Living Matters, Dying Matters strategy’ (2010)

UK-wide

Department of Health, Northern Ireland Department of Health, Welsh Government, Scottish Government, Public Health Agency, Allied Health Professions Federation, ‘UK Allied Health Professions Public Health Strategic Framework 2019-2024

Learning resources

Guidance

NICE

• NICE guidelines and quality standards relating to dementia

England

• NHS England, ‘Intercultural dementia care: A guide for health and care workers’ (2023)
• Gov.uk, ‘Dementia: Applying All Our Health’ (2022)
• NCCMH, Dementia Pathway (2018)
• Gov.uk Dementia data and analysis: a guide for health professionals (2016. Updated 2019)

Scotland

• SIGN guideline on the Assessment, diagnosis, care and support for people with dementia and their carers (2023)
• Scottish Government, ‘My Health, My Care, My Home – healthcare framework for adults living in care homes’ (2022)
• Scottish Government ‘Dementia – health and social services staff: framework – Promoting Excellence’ (2021)
• My New Home, supporting people with an intellectual/learning disability and dementia moving into a care home (2022)
• Care Inspectorate ‘Supporting people with eating, drinking and swallowing difficulties (Dysphagia)’ (2020)
• Scottish Government, ‘Transforming specialist dementia hospital care’ (2018)
• Scottish Government, ‘National health and well-being outcomes’ (2018)
• Scottish Government’ ‘Standards of Care for Dementia in Scotland’ (2011)
• Alzheimer’s Scotland, ‘Charter of Rights for people with Dementia and their Carers in Scotland’ (2009)
• Dementia Together (Connecting people, connecting support)

Wales

• Social Care Wales, ‘Dementia care and support learning and development implementation toolkit’ (2022)
• Improvement Cymru, ‘All Wales Dementia Care Pathway of Standards’ (2021)
• Welsh Government, ‘Integrated care fund: 2021 to 2022 guidance’ (2020)

Northern Ireland

• Health and Social Care, ‘Dementia Learning and Development Framework’ (2016)

E learning

• NHS England, ‘ELearning for healthcare: Dementia’
• Dementia awareness elearning course (Social Care Institute for Excellence with content from the Alzheimer’s Society)
• Royal College of Psychiatrists e-learning: Improving access, experience and outcomes for people living with dementia from ethnic minority communities

Toolkits

• Bournemouth University Eating and Drinking Well with Dementia Toolkit
• NHS Dumfries & Galloway Communication and Mealtime Toolkit
• Living with Dementia toolkit

Awareness raising dates

• Alzheimer’s Society, Dementia Action Week (May)
• World Alzheimer’s Day (12 September)

Useful organisations

• Age UK
• Alzheimer Europe
• Alzheimer Scotland
• Alzheimer’s Society
• Barnardo’s young carer network
• Brain Health Scotland
• British Dietetic Association
• Carers Trust
• Dementia Action Alliance
• Dementia Carers Count
• Dementia Concern
• Dementia Friends
• Dementia UK
• Parkinson’s UK
• Rare Dementia Support
• tide (together in dementia everyday)

Related RCSLT guidance and resources

• Bilingualism
• Clinical guidance A-Z
• Delivering quality services
• Dementia Position Paper 2024
• Dysphagia
• Eating and drinking with acknowledged risks
• End of life care
• Learning disabilities
• Meeting the HCPC standards
• Mental health adults
• Mouth care
• Outcome measurement
• Position paper on dementia
• Progressive neurological disorders
• Settings where SLTs work
• Supported decision making and mental capacity
• Thickened liquids (position statement)