Practical Dementia Care for Adults with Down Syndrome or with Intellectual Disabilities

Vee Prasher, MD, PhD, MMedSci
Liverpool John Moores University, Birmingham, UK

Series: Psychiatry – Theory, Applications and Treatments
BISAC: MED056000

Clear

$179.00

eBook

Digitally watermarked, DRM-free.
Immediate eBook download after purchase.

Product price
Additional options total:
Order total:

Quantity:

Details

Dementia in adults with Down Syndrome or with intellectual disabilities is a rapidly growing field of health and social care. There is, however, limited information available for families and health care providers on how best to manage associated behaviors and difficulties. This book is the first published book to provide day to day practical advice on how to care for a person with Down Syndrome or with intellectual disabilities who suffers from dementia. The book primarily emphasizes how best to cope with the clinical problems of dementia but also includes information on the epidemiology, common types of dementia and on the historical perspective of dementia in Down Syndrome and intellectual disabilities.

It discusses the wide range of physical, psychological, social and legal issues of the different levels of dementia from the time of diagnosis to the end of life. The book includes chapters on aggression, epilepsy, drug treatments and end-of-life issues. This book is aimed principally at family members and caregivers but is also recommended for professionals, including physicians, psychologists, nurses, health related therapists, working in the field of aging and intellectual disabilities. It supplements the more medically orientated textbooks on dementia in Down Syndrome or intellectual disabilities. It is an invaluable resource in this much neglected area of care provision. (Imprint: Nova)

Preface

About the Author

Chapter 1. Historical Perspective of Dementia in Adults with Down Syndrome and Intellectual Disabilities

Chapter 2. Overview of Dementia in Adults with Down Syndrome and Intellectual Disabilities

Chapter 3. Memory Loss

Chapter 4. Delirium

Chapter 5. Behavioural Issues

Chapter 6. Communication Difficulties

Chapter 7. Urinary and Faecal Incontinence

Chapter 8. Epilepsy

Chapter 9. Aggression

Chapter 10. Nutrition and Dysphagia

Chapter 11. Wandering

Chapter 12. Vision and Hearing Impairment

Chapter 13. Falls and Prevention

Chapter 14. Pressure Sores and Wounds

Chapter 15. Depression and Mood Swings

Chapter 16. Use of Medication

Chapter 17. Daycare and Long-Term Placements

Chapter 18. End-of-Life Care

Chapter 19. Role of Professionals and Services

Chapter 20. Seeking Help and Support from Services

Chapter 21. Other Advice and Support Issues

Chapter 22. Legal Issues

Glossary

References

Index

Chapter 1

Dalton, A.J. and Wisniewski, H.M. Down’s syndrome and dementia of Alzheimer’s disease. International Review of Psychiatry. 1990, 2, 43-52.
Dodd, K., Turk, V. and Christmas, M. Down’s Syndrome and Dementia: a resource for carers and support staff. Second edition. Kidderminster: BILD. 2009
Down, J.L. Observations of an ethnic classification of idiots. London Hospital Reports. 1866, 3, 259-262.
Fraser, J., and Mitchell, A. Kalmuc idiocy: Report of a case with autopsy. With notes on sixty-two cases. Journal of Mental Science. 1876. 22, 169-179.
Jervis, G.A. Early senile dementia in mongoloid idiocy. American Journal of Psychiatry. 1948, 105, 102-106.
Jervis, G.A. Premature Senility in Down’s syndrome. Annals of the New York Academy of Sciences. 1970, 171, 559-561.
Mann, D.M.A. The pathological association of Down syndrome and Alzheimer disease. Mechanisms of Ageing and Development. 1988, 43, 99-136.
Oliver, C. and Holland, A. Down’s syndrome and Alzheimer’s disease; a review. Psychological Medicine. 1986, 16, 307-322.
Prasher, V.P. Alzheimer's Disease and Dementia in Down Syndrome and Intellectual Disabilities. Radcliffe Publishing Ltd. Oxon UK. 2005.
Wilkinson, H. and Janicki, M.P. The Edinburgh Principles with the accompanying guidelines and recommendations. Journal of Intellectual Disability Research. 2002, 46, 279-284.
Zigman, W., Silverman, W. and Wisniewski, H.M. Ageing and Alzheimer’s disease in Down’s syndrome: clinical and pathological changes. Mental Retardation and Developmental Disabilities Research Reviews. 1996, 2, 73-79.

Chapter 2

Aylward, E.H., Burt, D.B., Thorpe, L.U., Lai F. and Dalton, A. Diagnosis of dementia in individuals with intellectual disability. Journal of Intellectual Disability Research. 1997, 41, 152-164.
Baird, P.A. and Sadovick, A.D. Life expectancy in Down’s syndrome. Paediatrics. 1987. 110, 849-854.
Cooper, S-A. Ageing in persons with learning disabilities: focus on Alzheimer’s disease. Current Opinion in Psychiatry. 1998. 11, 535-539.
Coppus, A.M., Evenhuis, H.M., Verberne, G.J., Visser, F.E., Arias-Vasquez, A., Sayed-Tabatabaei, F.A., Vergeer-Drop, J., Eikelenboom, P., van Gool, W.A. and van Duijn, C.M. The impact of apolipoprotein E on dementia in persons with Down's syndrome. Neurobiology of Aging. 2008, 29, 828-835.
Dalton, A.J., Crapper, D.R. Down’s syndrome and aging of the brain. Research to Practice in Mental Retardation in Biomedical Aspects III, edited by Mittler. P. 1977. 391-400.
Dalton, A.J. Dementia in Down syndrome: methods of evaluation. Progress in Clinical and Biological Research. 1992, 379, 51-76.
Eyman, R.K., Call, T.L. and White, J.F. Life expectancy of persons with Down’s syndrome. American Journal on Mental Retardation. 1991, 95, 603-612.
Haveman, M., Maaskant, M.A. and Sturmans, F. Older Dutch residents of institutions, with and without Down syndrome: Comparisons of mortality and morbidity trends and motor/social functioning. Australian and New Zealand Journal of Developmental Disabilities. 1989, 15, 241-255.
Karlinsky, H. Alzheimer’s disease and Down’s syndrome; a review. Journal of the American Geriatrics Society. 1986, 34, 728-734.
Lai, F. and Williams, R.S. A prospective study of Alzheimer’s disease in Down’s syndrome. Archives of Neurology. 1989, 46, 849-853.
Lott, I.T. and Head, E. Down’s syndrome and Alzheimer’s disease; A link between development and aging. Mental Retardation Developmental Disabilities Research Reviews. 2001, 7, 172-178.
Lott, I.T. Down's syndrome, aging, and Alzheimer's disease: a clinical review. Annals of the New York Academy of Sciences. 1982, 396, 15-27.
Mann, D.M.A. The pathological association of Down syndrome and Alzheimer disease. Mechanisms of Ageing and Development. 1988, 43, 99-136.
Prasher, V.P. Neuropsychological Assessments of Dementia in Down Syndrome and Intellectual Disabilities Springer-Verlag. London UK. 2008.
Prasher, V.P., Adams, C. and Holder, R. Long term safety and efficacy of donepezil in the treatment of dementia in Alzheimer's disease in adults with Down syndrome: open label study. International Journal of Geriatric Psychiatry. 2003, 18, 549-551.
Prasher, V.P. and Krishnan, V.H.R. The age of onset and duration of dementia in persons with Down’s syndrome: Integration of 98 reported cases in the literature. International Journal in Geriatric Psychiatry. 1993, 8, 915-922.
Prasher, V.P. Review of donepezil, rivastigmine, galantamine and memantine for the treatment of dementia in Alzheimer's disease in adults with Down syndrome: implications for the intellectual disability population. International Journal of Geriatric Psychiatry. 2004, 19, 509-515.
Pueschel, S.M. and Pueschel, K. Biomedical Concerns in Persons with Down Syndrome. Paul H. Brookes Publishing Co. 1992.
Roeden, J.M. and Zitman, F.G. Ageing in adults with Down's syndrome in institutionally based and community-based residences. Journal of Intellectual Disability Research. 1995, 39, 399-407.
Stratford, B. and Steele, J. Incidence of prevalence of Down’s syndrome – a discussion and report. Journal of Mental Deficiency Research. 1985, 29, 95-107.
Thase, M.E. Longevity and mortality in Down’s syndrome. Journal of Mental Deficiency Research. 1982. 26, 177-192.
Zigman, W., Schupf, N., Haveman, M. and Silverman, W.J. The epidemiology of Alzheimer disease in intellectual disability: results and recommendations from an international conference. Journal of Intellectual Disabilities Research. 1997, 41, 76-80.
Zigman, W.B., Schupf, N., Sersen, E. and Silverman, W. Prevalence of dementia in adults with and without Down’s syndrome. American Journal on Mental Retardation. 1995, 100, 403-412.

Chapter 3

Breitner, J.C. and Welsh, K.A. Diagnosis and management

of

memory

loss and cognitive disorders among elderly persons. Psychiatric Services 1995 46. 29-35.
Dalton, A.J., Mehta, P.D., Fedor, B.L. and Patti, P.J. Cognitive changes in memory precede those in praxis in aging persons with Down syndrome. Journal of Intellectual and Developmental Disability. 1999; 24,169-187.
Devenny, D.A., Krinsky-McHale, S.J., Sersen, G. and Silverman, W.P. Sequence of cognitive decline in dementia in adults with Down's syndrome. Journal of Intellectual Disability Research: 2000. 44. 654-65.
Devenny, D.A., Krinsky-McHale, S.J., Sersen, G. and Silverman, W.P. Sequence of Cognitive Decline in Dementia in Adults with Down’s Syndrome. Journal of Intellectual Disability Research. 2000; 44, 654-665.
Evenhuis, H.M. The natural history of dementia in ageing people with intellectual disability. Journal of Intellectual Disability Research. 1997; 41, 92-96.
Margallo-Lana, M.L. Fifteen-year follow-up of 92 hospitalized adults with Down’s syndrome: incidence of cognitive decline, its relationship to age and neuropathology. Journal of Intellectual Disability Research. 2007, 51, p463-477.

Chapter 4

Beary, T. Delirium prevention: early recognition and treatment. Nursing & Residential Care. 2013; 15, 547-51.
de Lange, E., Verhaak, P.F. and van der Meer, K. Prevalence, presentation and prognosis of delirium in older persons in the population, at home and in long term care: a

review. International Journal of Geriatric Psychiatry 2013; 28. 127-34.
Downing, L.J., Caprio, T.V. and Lyness, J.M. Geriatric Psychiatry Review: Differential Diagnosis and Treatment of the 3 D’s –Delirium, Dementia, and Depression. Curr Psychiatry Rep. 2013; 15 365.
Martins, S. and Fernandes, L. Delirium in elderly people: a review. Frontiers in Neurology 2012; 3, 101.
McCusker, J., Cole, M.G., Voyer, P., Vu, M., Ciampi, A., Monette, J., Champoux, N., Belzile, E. and Dyachenko, A. Environmental Factors Predict the Severity of Delirium Symptoms in Long-Term Care Residents with and without Delirium. Journal of American Geriatric Society. 2013; 61 502-511.
Simpson, N. Delirium in adults with intellectual

disabilities and DC-LD. Journal of Intellectual Disability Research. 2003 Supplement 1 p38-42.
Whittamore, K.H., Goldberg, S.E., Gladman, R.F., Bradshaw, L.E., Jones, R.G. and Harwood, R.H. (2013). The Diagnosis, Prevalence and Outcome of Delirium in a Cohort of Older Persons with Mental Health Problems on General Hospital Wards. International Journal of Geriatric Psychiatry. 2013; 42, 582–588.

Chapter 5

Adams, D. et al. Behavioural characteristics associated with dementia assessment referrals in adults with Down syndrome. Journal of Intellectual Disability Research. 2008, 5, 358-368.
Cooper, S-A. and Prasher, V.P. Maladaptive behaviours and symptoms of dementia in adults with Down's syndrome compared with adults with intellectual

disability of other aetiologies. Journal of Intellectual Disability Research. 1998; 42, 293-300.
Cosgrave, M.P. et al. Determinants of aggression, and adaptive and maladaptive behaviour in older persons with Down’s syndrome with and without dementia

. Journal of Intellectual Disability Research. 1999; 43, p393-399.
de Winter, C.F., Jansen, A.A. and Evenhuis, H.M. Physical conditions and challenging behaviour in persons with intellectual disability: a systematic review. Journal of Intellectual Disability Research 2011; 55, 675-98.
Janicki, M.P. Quality outcomes in group home dementia care for adults with

intellectual

disabilities. Journal of Intellectual Disability Research. 2011; 55, 763-776.
Prasher, V.P. and Filer, A. Behavioural disturbance in persons with Down’s syndrome and dementia. Journal of Intellectual Disability Research 1995; 39; 432-436.

Chapter 6

Stokes, Graham. Tackling communication challenges in dementia. Nursing Times. 2013;109, 14-15.

Chapter 7

Drennan, V.M., Greenwood, N., Cole, L., Fader, M., Grant, R., Rait, G. and Iliffe, S. Conservative Interventions for Incontinence in Persons with Dementia or Cognitive Impairment, Living at Home: A Systematic Review. BioMed Central Geriatrics. 2012; 12, 77.
Drennan, V.M., Norrie, C., Cole, L. and Donovan, S. Addressing Incontinence for People with Dementia Living at Home: A Documentary Analysis of Local English Community Nursing Service Continence Policies and Clinical Guidance. Journal of Clinical Nursing. 2012; 22, 339-346.
Hagglund, D. A Systematic Literature Review of Incontinence Care for Persons with Dementia: The Research Evidence. Journal of Clinical Nursing. 2010; 19, 303-312.
Ouslander, J.G., Zarit, S.H., Orr, N.K. and Muira, S.A. Incontinence among elderly community-dwelling dementia

patients. Characteristics, management, and impact on caregivers. Journal of the American Geriatrics Society 1990; 38, 440-5.

Chapter 8

Bowley, C. and Kerr, M. Epilepsy and intellectual disability. J Intellect Disabil Res. 2000; 44, 529-43.
Kerr et al. Consensus guidelines into the management of epilepsy in adults with an intellectual disability. Journal of Intellectual Disability Research 2009; 53, 687–694.
Prasher, V.P. and Kerr, M. (Eds.) Epilepsy and Intellectual Disabilities. Springer Press 2008
Prasher, V.P. and Corbett, J.A. Onset of seizures as a poor indicator of longevity in persons with Down syndrome and dementia. International Journal of Geriatric Psychiatry 1993; 8, 923–927.

Chapter 9

Cooper, S.A. Psychiatric symptoms of dementia among elderly persons with learning disabilities. International Journal of Geriatric Psychiatry 1997; 12, 662-6.
Cooper, S.A. and Prasher, V.P. Maladaptive behaviours and symptoms of dementia in adults with Down’s syndrome compared with adults with intellectual disability of other aetiologies. Journal of Intellectual Disability Research 1998; 42, 293-300.
Cosgrave, M.P., Tyrrell, J., McCarron, M., Gill, M. and Lawlor, B.A. Determinants of aggression, and adaptive and maladaptive behaviour in older persons with Down’s syndrome with and without dementia. Journal of Intellectual Disability Research. 1999; 43, 393-399.
Gitlin, L.N., Kales, H.C. and Lyketsos, C.G. Nonpharmacologic Management of Behavioural Symptoms in Dementia. JAMA. 2012; 308, 19.
Itil, T.M. and Wadud, A. Treatment of human aggression with major tranquilizers, antidepressants, and newer psychotropic drugs. The Journal of Nervous and Mental Disease 1975; 160, 83-99.
Zec, Ronald F. and Burkett, Nicole R. Non-pharmacological and pharmacological treatment of the cognitive and behavioral symptoms of Alzheimer disease. NeuroRehabilitation. 2008; 23, 425-438.

Chapter 10

Alagiakrishnan, K., Bjanji, R.A. and Kurian, M. Evaluation and Management of Oropharyngeal Dysphagia in Different Types of Dementia: A Systematic Review. Archives of Gerontology and Geriatrics. 2013; 56, 1-9.
Ball, S.L., Panter, S.G., Redley, M., Proctor, C.A., Byrne, K., Clare, I.C. and Holland, A.J. The extent and nature of need for mealtime support among adults with intellectual disabilities. Journal of Intellectual Disability Research 2012; 56, 382-401.
Crawley, C. and Hocking, E. Eating Well: Supporting Older People and Older People with Dementia.

The Caroline Walker Trust. Wordworks, London W4 4DB. 2011.
Parker, M. and Power, D. Management of Swallowing Difficulties in People with Advanced Dementia. Nursing Older Persons. 2013; 25, 26-31.
Prasher, V.P., Metseagharun, T. and Haque, S. Weight loss in adults with Down syndrome and with dementia in Alzheimer’s disease. Research in Developmental Disabilities 2004; 25, 1-7.
Silva, P., Kergoat, M.J. and Shatenstein, B. Challenges in Managing the Diet of Older Adults with Early-Stage Alzheimer Dementia: A Caregiver Perspective. The Journal of Nutrition, Health and Aging. 2013; 17, 142-147.
Smith, H.A., Kindell, J., Baldwin, R.C., Waterman, D. and Makin, A.J. Swallowing Problems and Dementia in Acute Hospital Settings. Practical Guidance for the Management of Dysphagia. Clinical Medicine. 2009; 9, 544-548.
Working Group. Eating well for older people. The Caroline Walker Trust. Wordworks, London W4 4DB. 1995.
Wright, D., Beavon, N., Branford, D., Griffith, R., Harding, C., Howseman, T., Rasmussen, J., Sandhu, B., Shmueli, U., Smith, A. and White, A. Guideline for the Identification and Management of Swallowing Difficulties in Adults with Learning Disability. 2013; 3-11.

Chapter 11

Algase, D.L., Beattie, E.R.A., Antonakos, C., Beel-Bates, C.A. and Yao, L. Wandering and the Physical Environment. American Journal of Alzheimer’s Disease and Other Diseases. 2010; 25, 340-346.
Algase, D.L. Wandering. A dementia-compromised behavior. Journal of gerontological nursing. 1999; 25,10-6.
Halek, M. and Bartholomeyczik, S. Description of the behaviour of wandering in people with dementia living in nursing homes - a review of the literature. Scandinavian Journal of Caring Sciences 2012; 26, 404-13
Halek, M. Description of the behaviour of wandering in people with dementia living in nursing homes – a review of the literature. Scandinavian Journal of Caring Sciences. 2011;26, 404-413.
Landau, R. and Werner, S. Ethical aspects of using GPS for tracking people with dementia: recommendations for practice. International Psychogeriatrics. 2012; 24, 358-366.
Moore, D.H., Algase, D.L., Powell-Cope, G. and Beattie, E.R.A. A Framework for Managing Wandering and Preventing Elopement. American Journal of Alzheimer’s Disease and Other Diseases. 2009; 24, 208-219.
Yokoi, T., Aoyama, K., Ishida, K. and Okamura, H. Conditions Associated with Wandering in People with Dementia from the Viewpoint of Self-Awareness: Five Case Reports. American Journal of Alzheimer’s Disease & Other Dementias. 2012; 27,162-170.

Chapter 12

Evenhuis, H.M. Medical aspects of ageing in a population with intellectual

disability: II.

Hearing impairment. Journal of Intellectual Disability Research 1995; 39, 27-33.


Janicki, Matthew P. and Dalton, Arthur J. Sensory impairments among older adults with intellectual

disability. Journal of Intellectual & Developmental Disability. 1998, 23 p3.
Van Schrojenstein Lantman-De Valk, H.M., Haveman, M.J. and Crebolder, H.F. Comorbidity in people with Down's syndrome: a criteria-based analysis. Journal of Intellectual Disability Research 1996; 40, 385-99.

Chapter 13

Kropelin, T.F., Neyens, J.C.L., Halfens, R.J.G., Kempen, G.I.J.M. and Hamers, J.P.H. Fall determinants in older long-term care residents with dementia: a systematic review. International Psychogeriatrics. 2013; 25, 549-563.
Meijers, J.M., Halfens, R.J., Neyens, J.C., Luiking, Y.C., Verlaan, G. and Schols, J.M. Predicting falls in elderly receiving home care: the role of malnutrition and impaired mobility. J Nutr Health Aging. 2012; 16, 654-8.
Suttanon, Plaiwan, Hill, Keith D., Said, Catherine M. and Dodd, Karen J. A Longitudinal Study of Change in Falls Risk and Balance and Mobility in Healthy Older People and People with Alzheimer Disease. American Journal of Physical Medicine & Rehabilitation. 2013;92, 676-685.
Whitney, J., Close, J.C.T., Jackson, S.H.D. and Lord, S.R. 'Understanding Risk of Falls in People With Cognitive Impairment Living in Residential Care'. Journal of the American Medical Directors’ Association, 2012; 13, 535-540.


Chapter 14

Bennett, R.B., Bellantoni, M.F. and Ouslander, J.G. Air-Fluidized Bed Treatment of Nursing Home Patients with Pressure Sores. Journal of American Geriatrics Society. 1989; 37, 235-242.
Jaul, E. Assessment and Management of Pressure Ulcers in the Elderly. Drugs Aging. 2010; 27, 311-325.

Chapter 15

Burt, D.B., Loveland, K.A. and Lewis, K.R. Depression and the onset of dementia in adults with mental retardation. American Journal of Mental Retardation 1992; 96, 502-11.
Hurley, A.D. Depression in adults with intellectual

disability: symptoms and challenging behaviour. Journal of Intellectual Disability Research: 2008; 52, 905-16.
McCarron, M., Gill, M., McCallion, P. and Begley, C. Health co-morbidities in ageing persons with Down syndrome and Alzheimer's dementia. 2005; 49, 560-6.
Patel, P., Goldberg, D. and Moss, S. Psychiatric morbidity in older people with moderate and severe learning disability. II: The prevalence study. The British Journal of Psychiatry. 1993; 163, 481-91.
Prasher, V.P. Age-specific prevalence, thyroid dysfunction and depressive symptomatology in adults with Down syndrome and dementia. International Journal of Geriatric Psychiatry 1995;10, 25-31.
Walker, J.C., Dosen, A., Buitelaar, J.K. and Janzing, J.G. Depression in Down syndrome: a review of the literature. Research in Developmental Disabilities 2011; 32, 1432-40.

Chapter 16

Lott, I.T., Osann, K., Doran, E. and Nelson, L. Down

syndrome and Alzheimer disease: response to donepezil. Archives of Neurology 2002; 59, 1133-6.
Prasher, V.P., Huxley, A. and Haque, S. A 24-week double blind, placebo-controlled trial of donepezil in patients with Down syndrome and Alzheimer’s disease-pilot study. International Journal of Geriatric Psychiatry 2002; 17, 270-278.
Prasher, V.P., Adams, C. and Holder, R. Long term safety and efficacy of donepezil in the treatment of dementia in Alzheimer’s disease in adults with Down syndrome. Open label study. International Journal of Geriatric Psychiatry 2003; 8, 549-551.
Prasher, V.P. Review of donepezil, rivastigmine, galanatamine and memantine for the treatment of dementia in AD in adults with Down syndrome: implications for the intellectual disability population. International Journal of Geriatric Psychiatry 2004; 19, 1-7.
Prasher, V.P., Fung, N. and Adams, C. Rivastigmine in the treatment of dementia in Alzheimer’s disease in adults with Down syndrome population. International Journal of Geriatric Psychiatry 2005; 20, 496-497.
Royal College of Psychiatrists. Atypical antipsychotics and BPSD. Summary of prescribing update for old age psychiatrists. Atypical Antipsychotic Prescribing Update Summary. 2004.
Tsiouris, J.A. and Patti, P.J. Drug Treatment of Depression Associated with Dementia or Presented as ‘Pseudodementia’ in Older Adults with Down Syndrome. Journal of Applied Research in Intellectual Disabilities 1997;10, 312-322.
Woodward, M., Katz, B., Elliott, R., Vernon, G., Tanner, F. and Saunders, R. Problems with Medication Use in the Elderly; An Australian Perspective. Journal of Pharmacy Practice and Research. 2006; 36, 58-66.

Chapter 17

Iacono, T., Bigby, C., Carling-Jenkins, R. and Torr, J. Taking each day as it comes: staff experiences of supporting people with Down Syndrome and Alzheimer's disease in group homes. Journal of Intellectual Disability Research 2013; doi: 10.1111/jir.12048.
Janicki, M.P. Quality outcomes in group home dementia care for adults with intellectual

disabilities. Journal of Intellectual Disability Research 2011; 55, 763-76
Janicki, M.P., McCallion, P. and Dalton, A.J. Dementia-related care decision-making in group homes for persons with intellectual disabilities. Journal of Gerontological Social Work 2002; 38,: 179-95.

Chapter 18

Borsford, A. dealing with end of life, In M. Janicki and E Ansello (eds). Coomunity supports for aging adults with lifelong disabilities. Baltimore Paul. H. Brookes 2000, 415-432.
Cathcart, F. Death and people with learning disabilities. Interventions to support clients and carers. British Journal of Clinical Psychology 1995; 34, 165-175.
Cross, H., Cameron, M., Marsh, S. and Tuffrey-Wijne, I. Practical approaches towards improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. Journal of Palliative Medicine 2012; 15, 322-326.
Jones, A. Palliative care and people with learning disabilities. Learning Disability Practice. 2003; 6, 30-36.
McCarron, M. and McCallion, P. End-of-life care challenges for persons with intellectual disability and dementia: making decisions about tube feeding. Intellectual and Developmental Disabilities 2007;45,128-31.
Prasher, V. End-stage dementia in adults with Down syndrome. International Journal of Geriatric Psychiatry 1995; 10, 1067-1069.
Read, S. and Eilliot, D. Care planning in palliative care for persons with intellectual disabilities. In B. Gates (ed.). Care planning and delivery in intellectual disability nursing. London: Blackwell Publishing. 2006.
Sleeman, Katherine E. and Collis, Emily. Caring for a dying patient in hospital. British Medical Journal. 2013; 346, 33-37.
Tuffrey-Wijne, I., Hogg, J., and Curfs, L. End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disability. 2007; 20, 331-344.

Chapter 19

Brown, I. and Percy, M. (2007). A Comprehensive Guide to Intellectual and Developmental Disabilities. Paul H Brookes Publishing Co. Baltimore, Maryland.
Howells, G. Down's syndrome and the general practitioner. The Journal of the Royal College of General Practitioners. 1989; 39, 470-475.

Chapter 20

Dodd, K. Supporting People with Down's Syndrome and Dementia. Tizard Intellectual disability Review. 2003; 8, 14-18.
Janicki, M.P., Zendell, A. and DeHaven, K. Coping with dementia and older families of adults with Down syndrome. Dementia. 2010; 9, 391-407.
McCarron, M., McCallion, P., Fahey-McCarthy, E., Connaire, K. and Dunn-Lane, J. Supporting persons with Down syndrome and advanced dementia: challenges and care concerns. Dementia. 2010; 9, 285-298.

Chapter 21

Brown, I. and Percy, M. (2007). A Comprehensive Guide to Intellectual and Developmental Disabilities. Paul H Brookes Publishing Co. Baltimore, Maryland.
Rabins PV, lyketsos CG, Steele CD. Practical Dementia Care. Oxford University Press 1999.

Chapter 22

Department for Constitutional Affairs. Mental Capacity Act 2005 code of practice. TSO. 2007.
Department for Constitutional Affairs. Mental Capacity Act 2005. Deprivation of liberty safeguards. TSO. 2008.
Great Britain: Department of Health. Code of practice: Mental Health Act 1983 (2008 Revised). TSO. 2008.
Jones, R. Mental Health Act Manual. Sweet and Maxwell Ltd. 2012.
Richards, S. and Mughal, A.F. Working with the Mental Capacity Act 2005. Matrix Training Associates Ltd. 2006.

Audience: Professionals working with persons with Down syndrome. Down syndrome organizations. Of interest to carers and families of adults with Down syndrome.

You have not viewed any product yet.