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Clinical practice in both hospital and community settings together with patient and carer feedback highlights an often disjointed approach to the long-term management of medical, psychological and social needs for younger patients with cognitive impairment/atypical dementia/Huntington’s disease. Poorly informed and coordinated care can have a detrimental effect on the patient that may increase their rate of decline and impact negatively on wider family and social relationships. Residential placement is often required to ensure safe support yet few homes or community services are familiar with the needs of this patient group or the specific interventions or approaches that might be useful in younger onset dementia/Huntington’s disease.
Building on data collected through previous CLAHRC project (2015) it is intended to develop a set of care guidelines for the following groups:
• Primary care services
• Acute hospital services/in-patient services including mental health services
• Community services – e.g. adult social care, child and family services
• Carers – informal carers (family) and residential and nursing care home staff
Guidelines will bring together clinical/practice expertise, evidence-based treatments and interventions that aid proactive and rehabilitative care. The guidelines will highlight risk and crisis management, behavioral management/neuropsychiatric disorder (including psychiatric first-aid), life-style management and family support.
To produce a set of practice guidelines for the management of cognitive impairment/Huntington’s disease in acute and community settings that support safe, evidence-based and patient-focused care that reduces risk to the patient, optimizes their abilities and interests and guides clinicians and carers toward interventions that support independence or less dependence.
Guidelines will support a risk rating scale that can be used to measure need and change as appropriate. The combination of a risk rating process and guidelines will aim to promote a clearer pathway through the management of cognitive impairment/dementia and Huntington’s disease and address and build on some of the concerns raised in previous work with patients, carers and services.