Fund Us: Dementia

Definition of Dementia (American Psychiatric Association, 1994; WHO, 2016) Dementia is a syndrome of a chronic or progressive nature involving a deterioration in cognitive function beyond what may be expected from normal ageing. Multiple cognitive deficits: Impairment of memory Aphasia Agnosia Apraxia Impaired executive functioning These deficits must represent a decline from a previous higher level of functioning and cause impairment in occupational or social functioning

Facts and Figures 850,000 people with dementia in the UK Context: 1 million by 2025 2 million by 2050 (Alzheimer’s Society, 2017) Context: 350,000 with aphasia (Stroke Association, 2017) 1 million children with speech, language and communication needs (I CAN, 2013) BUT prevalence not increasing at same rate as dementia: Research found rising obesity and ageing population will worsen future prevalence of dementia (Nepal, Brown and Anstey, 2014)

Impact of Dementia Communication Mild dementia: Word finding difficulties Anterograde amnesia Depression and anxiety Moderate dementia: Comprehension difficulties Reduced attention span Hallucinations and delusions (Alzheimer’s Association, 2017) Severe dementia: Echolalia Neologisms Apathy and aggression (Lyketsos et al., 2011)

Impact of Dementia Dysphagia Dysphagia occurs in approximately 45% of people with dementia in institutional care (Horner et al., 1994). Slowing of swallowing process (Groher & Crary, 2010): Increased time taken to eat meals Increased risk of malnutrition Difficulties self-feeding due to cognitive impairment, motor deficits, loss of appetite or food avoidance (Groher & Crary, 2010): Weight loss Increased dependency for feeding Increased risk of pneumonia Increased risk of death

Impact of Dementia Carer Majority of people with dementia are cared for in their own homes by family members (Callahan et al., 2012). More than 500,000 family carers of people with dementia providing approximately £6 billion worth of unpaid care per year (Department of Health, 2009). Carers of people with dementia experience more burden than carers of people with other chronic illnesses (Draper et al., 1992). Dementia has wide ranging implications for individuals and their carers (Brodaty et al., 2003): Physical Mental Financial Quality of life

Role of the SLT in Dementia (NICE 2017, RCSLT 2014) Assessment Aid diagnosis Language disorder plays a prominent role in some dementias Many clients present with dysarthria Work with MDT to avoid misdiagnosis Identify the nature, severity and impact of eating/ drinking/ swallowing disorder Assess aspiration/ choking risk The impact of dementia symptoms on communication Challenges and risks to the PWD as a result of communication difficulties The extent to which challenging behaviours result from unmet communication needs Capacity for decision making • Likely prognosis Inform intervention Direct intervention Maintain/ maximise communication function Implement personalised communication strategies Manage stress arisen from communication difficulties Group intervention to maximise communication skills and provide a supportive social environment Make recommendations for managing swallowing difficulties Contribute to end-of-life discussions around feeding Work with carers to implement communication strategies Facilitate use of communication strategies in all environments Incorporate communication requirements into MDT care plan Advocate for and facilitate equal access to services for PWD Indirect intervention Family Carers Health/ social/ voluntary sector staff Students Wider community On all of the above things Training

Risks of not providing SLT: Communication Dependence, Low self-esteem, Risk of needs not being met Loss of meaningful interaction strain on relationships, decreased QOL Implications of dysphagia  aspiration, choking, malnutrition, dehydration, decreased QOL, reduced socialisation, anxiety around mealtimes Delayed diagnosis and treatment Barrier to communicating with other healthcare professionals (Orange & Ryan, 2000) No communication or dysphagia training for carers (RCSLT, 2014)

Cost of Dementia (Alzheimer’s Society, 2017) Dementia costs the UK £26bn a year. 2/3 of this is paid by people with dementia or their families. In 2013/2014, £264.2mn was wasted as a result of poor dementia care in hospitals. This cost could be reduced if hospital staff received adequate dementia training. (Alzheimer’s Society, 2017)

Why fund SLT for dementia? People with Dementia are considered to be one of the largest expanding caseloads for SLTs. (Mahendra & Arkins, 2003). According to the RCSLT (2017), “It is important that SLT services are adequately resourced to provide quality care for people with dementia.” However, some services are currently unable to see people with dementia for communication problems because funding is not provided. With extra funding, more focus can be put on providing communication therapy.

Why fund SLT for dementia? People with dementia are at a significant disadvantage with healthcare staff. With extra funding, SLTs can offer education and training to healthcare staff, carers and families in effective communication strategies for people with dementia. Speech and Language Therapy is successful in training care staff working with older adults to use positive communication strategies and have better understanding of communication disorders. (Maxim et al., 2001).

References Alzheimer’s Association. (2017). Stages of Alzheimer’s. Retrieved March 15, from http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp Alzheimer’s Society. (2017). Facts for the Media. Retrieved March 15, 2017, from https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_fo r_the_media Alzheimer’s Society. (2017). Financial Cost of dementia. Accessed online: https://www.alzheimers.org.uk/info/20091/what_we_think/146/financial_ cost_of_dementia American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th edition. Washington, D.C.: American Psychiatric Press, 1994. Brodaty, H., Green, A. and Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 657–664. Callahan CM, Arling G, Tu W, et al. Transitions in care for older adults with and without dementia. J Am Geriatr Soc. 2012; 60(5):813-820.

References (continued) Department of Health. (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health. Draper, B. M., Poulos, C. J. and Cole, A. M. D. (1992). A comparison of caregivers for elderly stroke and dementia victims. Journal of the American Geriatrics Society, 40, 896–901. Groher ME, Crary MA. Dysphagia: Clinical Management in Adults and Children. Maryland Heights, MO: Mosby Elsevier; 2010.  Horner J, Alberts MJ, Dawson DV, & Cook GM. Swallowing in Alzheimer’s disease. Alzheimer Dis Assoc Disord. 1994;8:177–19.  I CAN. (2013). Some Children Struggle. Retrieved March 15, 2017, from http://www.talkingpoint.org.uk/parents/speech-and-language/some-children-struggle Lyketsos CG, Carrillo MC, Ryan JM, et al. Neuropsychiatric symptoms in Alzheimer’s disease. Alzheimer’s Dement. 2011;7(5):532-539. Mahendra, N., & Arkins, S. (2003). Effects of four years of exercise, language and social interventions on Alzheimer discourse. Journal of Communication Disorders, 36 (5): 395-422. Maxim, J., Bryan, K., Axelrod, L., Jordan, L., & Bell, L. (2001). Speech and language therapists as trainers: enabling care staff working with older people. International Journal of Language and Communication Disorders 36 (1): 194-199.

References (continued) Nepal, B., Brown, L. J., & Anstey, K. J. (2014). Rising midlife obesity will worsen future prevalence of dementia. PLOS ONE. Retrieved March 15, 2017, from http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0099305 NICE. (2017). Dementia overview. Accessed online: http://pathways.nice.org.uk/pathways/dementia. Orange, J.B., & Ryan, E.B. (2000). Alzheimer’s disease and other dementias: implications for physician communication. Clinics in Geriatric Medicine, 16 (1): 153-173. RCSLT. (2014). Speech and language therapy provision for people with dementia. RCSLT. (2017). Dementia. Accessed online: https://www.rcslt.org/clinical_resources/dementia/overview Stroke Association. (2017). Aphasia and Communicating. Retrieved March 15, 2017, from https://www.stroke.org.uk/what-stroke/what-aphasia World Health Organisation. (2016). Dementia. Retrieved March 15, 2017, from http://www.who.int/mediacentre/factsheets/fs362/en/