Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: A scoping review

Article type: Review Article

Authors: Clare, Linda^{a; b; c; *} | Teale, Julia C.^d | Toms, Gill^e | Kudlicka, Aleksandra^{a; b} | Evans, Isobel^a | Abrahams, Sharon^f | Goldstein, Laura H.^g | Hindle, John V.^a | Ho, Aileen K.^h | Jahanshahi, Marjanⁱ | Langdon, Dawn^j | Morris, Robin^g | Snowden, Julie S.^k | Davies, Rhys^l | Markova, Ivana^m | Busse, Monicaⁿ | Thompson-Coon, Jo^b

Affiliations: [a] Centre for Research in Ageing and Cognitive Health, University of Exeter, Exeter, UK | [b] PenCLAHRC, University of Exeter Medical School, Exeter, UK | [c] Centre for Research Excellence in Cognitive Health, Australian National University, Canberra City, ACT, Australia | [d] Fettes College, Edinburgh, UK | [e] Wales School for Social Care Research, Bangor University, Bangor, Wales, UK | [f] Psychology-PPLS and Euan MacDonald Centre for Motor Neurone Disease Research, The University of Edinburgh, Edinburgh, Scotland, UK | [g] King’s College London, Institute of Psychiatry, Psychology and Neuroscience, London, UK | [h] School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK | [i] Institute of Neurology, University College London, London, UK | [j] Department of Psychology, Royal Holloway University of London, London, UK | [k] Cerebral Function Unit, Salford Royal NHS Foundation Trust, Salford, UK | [l] Walton Centre NHS Foundation Trust, Liverpool, UK | [m] Hull York Medical School, University of Hull, Hull, UK | [n] School of Medicine, Cardiff University, Cardiff, Wales, UK

Correspondence: [*] Address for correspondence: Professor Linda Clare, Centre for Research in Ageing and Cognitive Health (REACH), University of Exeter, St Luke’s Campus, Exeter EX1 2LU, UK. l.clare@exeter.ac.uk. http://www.psychology.exeter.ac.uk/REACH

Abstract: BACKGROUND:Despite its potentially significant impact, cognitive disability may be overlooked in a number of progressive neurodegenerative conditions, as other difficulties dominate the clinical picture. OBJECTIVE:We examined the extent, nature and range of the research evidence relating to cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in Parkinsonian disorders, multiple sclerosis (MS), frontotemporal dementias (FTD), motor neuron disease and Huntington’s disease. METHODS:Scoping review based on searches of MEDLINE and CINAHL up to 15 March 2016. RESULTS:We included 140 eligible papers. Over half of the studies, and almost all the randomised controlled trials, related to MS, while a number of single case studies described interventions for people with FTD. CR interventions addressed functional ability, communication and interaction, behaviour or memory. The majority of psychotherapy interventions involved cognitive behavioural therapy for depression or anxiety. Self-management interventions were mainly available for people with MS. There were few reports of interventions specific to caregivers. Numerous methodological challenges were identified. CONCLUSIONS:The limited range of studies for all conditions except MS suggests a need firstly to synthesise systematically the available evidence across conditions and secondly to develop well-designed studies to provide evidence about the effectiveness of CR and other psychological interventions.

Keywords: Parkinson’s disease, multiple sclerosis, frontotemporal dementia, motor neuron disease, Huntington’s disease, self-management, psychotherapy, caregiver

DOI: 10.3233/NRE-172353

Journal: NeuroRehabilitation, vol. 43, no. 4, pp. 443-471, 2018