Working Resources List on Dementia Care Management and Intellectual Disability





This bibliography was developed and is maintained by the Preparing Communtity Agencies for Adults Affected by Dementia- the "PCAD" Project. (listed below is v.9.0) The most recent version is available in a PDF file print-ready version

Alzheimer's Association
Guidelines for Dignity: Goals of Specialized Alzheimer/Dementia Care in Residential Settings
Chicago: The Alzheimer's Association [919 North Michigan Avenue, Suite 1000, Chicago, IL 60611-1676] (1992) 47 pp.
Abstract: Standards for care and structure of care settings housing persons affected by Alzheimer's disease. Includes sections on philosophy, pre-admission activities, admission, care planning and implementation, adapting to changes in condition, staffing and training, physical environment and "success indicators."

Alzheimer's Disease International
Planning and Design Guide for Community Based Day Care Centres
London: Alzheimer's Disease International [45/46 Lower Marsh, London SE1 7RG, United Kingdom (www.alz.co.uk)] (1999) 21 pp.
Abstract: An illustrated 21-page booklet highlighting main design issues and suggestions for organizing an effective environment for adults with dementia - with applications for residential environment.

Alzheimer's Disease Society
Safe as Houses -- Living alone with Dementia (A resource booklet to aid risk management)
London: Alzheimer's Disease Society [Gordon House, 10 Greencoat Place, London SW1P 1PH, United Kingdom] (1994) 30 pp.
Abstract: A 30 page booklet designed for the carer who is concerned about an older person with early to mid-stage dementia who may be living on their own. The booklet examines risks that the older adult may encounter and suggests how they could be minimized. The intent of the booklet is to aid the older person remain functional at home, with as minimal risk, for as long as possible. Covers personal care, finances, wandering, security, medication, utilities, and household safety. Whilst information is generic, resource information is geared toward the UK.

Antonangeli, J.M.
Of Two Minds: A Guide to the Care of People with the Dual Diagnosis of Alzheimer's Disease and Mental Retardation. 167 pp.
Malden, Mass.: Cooperative for Human Services [110 Pleasant Street, Malden, MA 02148] (1995)
Abstract: Written in training manual format, this text covers a range of topics related to dementia among persons with intellectual disabilities, including the notions behind dementia, structuring physical environments, safety and control issues, communication strategies, assessing and aiding with activities of daily living, behavior management strategies, medical concerns, and aiding carers. Much of the text is drawn from general practice in the Alzheimer's field with reference to application for settings with persons with intellectual disabilities.

Antonangeli. J.M.
The Alzheimer Project: Formulating a Model of Care for Persons with Alzheimers Disease and Mental Retardation
The American Journal of Alzheimers Disease, 1995, 10(4), 13-16.
Abstract: Article speaks to a pilot project conducted in Massachusetts to increase staffing, education and Alzheimer case management supports. Special supports were designed and offered to a number of adults with Down syndrome affected by dementia, including specialize assessments, team care planning meetings, home adaptations and behavior loss supports.

Aylward, E., Burt, D., Thorpe, L., Lai. & Dalton, A.J.
Diagnosis of Dementia in Individuals with Intellectual Disability: Report of the Task Force for Development of Criteria for Diagnosis of Dementia in Individuals with Mental Retardation
Journal of Intellectual Disability Research, 1997, 41, 152-164
Abstract: The foremost impediment to progress in the understanding and treatment of dementia in adults with intellectual disability is the lack of standardized criteria and diagnostic procedures. Standardized criteria for the diagnosis of dementia in individuals with intellectual disability are proposed, and their application is discussed. In addition, procedures for determining whether or not criteria are met in individual cases are outlined. It is the intention of the authors, who were participants of an International Colloquium on Alzheimer Disease and Mental Retardation, that these criteria be appropriate for use by both clinicians and researchers. Their use will improve communication among clinicians and researchers, and will allow researchers to test hypotheses concerning discrepancies in findings among research groups (e.g. dementia prevalence ranges and age of onset). This report is available also on www.aamr.org

Bauer, A.M., & Shea, T.M.
Alzheimers Disease and Down Syndrome: A Review and Implications for Adult Services
Education and Training of the Mentally Retarded, 1986, 21, 144-150
Abstract: In this article, the diagnosis of Alzheimer's disease and its progressive behavioral impact on persons with Down syndrome is discussed. Several implications and suggestions for care and service provision for adults with Down syndrome are presented, including that Alzheimer's disease in an adult with Down syndrome has an impact on the carer, adjusting communication strategies to correspond to the stage of dementia, aiding families to seek assistance from social agencies, stressing the remaining abilities and skills, aiding families and carers to develop realistic methods of providing care, and adapting the persons care and environment to help them cope with losses stemming from dementia. The authors also suggest proactive strategies for anticipating decline among adults with Down syndrome associated with dementia.

Brawley, E.C.
Designing for Alzheimer's Disease - Strategies for Creating Better Care Environments. 313 pp.
New York: Wiley (1997)
Abstract: 20 chapter general text on adapting homes and living environments for persons with dementia; applicable to home and other residential situations for adults with intellectual disabilities and dementia. Chapter sections include Aging and Alzheimer's disease, Sensory environment (light and aging vision, lighting, impact of color, patterns and texture, acoustical changes, and wayfinding guidelines), Special care settings (creating a home feeling, designing spaces, therapeutic gardens and outdoor spaces), Implementing effective interior design (furniture and fabrics, floor-covering, wall and ceiling finishes, windows and window treatments), and the Design process. Contains a directory of resources and a glossary of terms.,

Burt, D.B., & Aylward, E.
Assessment Methods of Diagnosis of Dementia
In M.P. Janicki & A.J. Dalton (Eds.), Dementia, Aging, and Intellectual Disabilities. pp. 141-156 Philadelphia: Brunner-Mazel (1999)
Abstract: Standardized diagnostic criteria and procedures are proposed to further progress in the understanding and treatment of dementia in adults with intellectual disabilities. This book chapter is a revised summary of previous reports prepared by participants of an international working group, which was conducted under the auspices of the International Association on Intellectual Disability and the American Association on Mental Retardation. Similarities in diagnostic issues between adults with intellectual disability and those in the general population are discussed, followed by a summary of issues unique to adults with intellectual disability. A brief overview of the application of ICD-10 diagnostic criteria to adults with intellectual disability is presented, including a description of procedures for determining whether criteria are met in individual cases. Finally, clinical and research recommendations are made.

Cairns, D., Kerr, D., Chapman, A.
Difference Realities: a Training Guide for People with Down's Syndrome and Alzheimer's Disease pp. 54
University of Stirling (Dementia Services Development Centre), Stirling, Scotland FK9 4LA
A working guide for staff who are working with people with intellectual disabilities affected by Alzheimer's disease. Topical sections cover the definitions of dementia and deal with diagnostic suggestions, as well as dealing with communication, helping maintenance of skills, dealing with challenging behaviors, structuring activities, and overall management of dementia. Written in an easy style, this guide is a very useful addition to any materials given to staff to help them understand and related to people affected by dementia.

Chaput, J.L.
Housing People with Alzheimer Disease as a Result of Down Syndrome: a Quality of Life Comparison Between Group Homes and Special Care Units in Long Term Care Facilities.
Master's thesis, Department of City Planning, University of Manitoba (1998)
Abstract: Report of study to determine which form of housing, group homes or special care units (SCUs), provided an enhanced quality of life for individuals with Down syndrome (DS) and Alzheimer disease (AD). Ten long term care (LTC) facilities with SCUs for people with AD in the Winnipeg, Canada area and ten group homes for people with DS and AD across Canada participated in the study. Results indicated that the group homes seemed to provide an enhanced quality of life for adults with DS and AD because they provided a home-like environment and they operated according to a therapeutic philosophy of care. In addition, costs for caregiving seemed to be more economical in group homes than in SCUs because group homes utilized lower staff wages and medical costs. Report provides information on practices and costs.

Chaput, J.L. & Udell, L.
Housing People with Alzheimer Disease as a Result of Down Syndrome: A Quality of Life Comparison Between Group Homes and Special Care Units in Long Term Care Facilities.
Journal of Intellectual Disability Research, 2000, 44, 236 (abstract No. 186) [Paper presented at the 11th World Congress of the International Association for the Scientific Study of Intellectual Disabilities, Seattle, Washington (USA), August 1-6, 2000]
Abstract: The purpose of the study was to determine which form of housing, i.e., group homes or special care units (SCUs), provided a better quality of life for individuals with Alzheimer disease (AD) as a result of Down syndrome (DS). The study also provided Winnserv Inc. ( a non-profit housing organization that houses people with mental disabilities) with important information. Using the study results, Winnserv Inc. was able to determine that their group homes were suitable to maintain individuals with DS and AD and that their group homes were more cost-effective than SCUs in terms of caregiving. Twenty caregivers from both group homes and SCUs were selected to participate in this study. Ten long term care (LTC) facilities with SCUs for people with AD were selected in the Winnipeg area and ten group homes for people with Down syndrome and AD were chosen in Winnipeg and across Canada. The results indicated that the group homes seemed to provide the best quality of life for people with AD as a result of Down syndrome because they provided a home-like environment and they operated according to a therapeutic philosophy of care. In addition, costs for caregiving seemed to be more economical in group homes than in SCUs because group homes utilized lower staff wages and medical costs. Based on the results, it was recommended that Winnserv Inc. continue to house people with DS and AD.

Cohen, U., & Wiesman, G.D.
Holding on to Home: Designing Environments for People with Dementia. 181 pp.
Baltimore: Johns Hopkins University Press (1991)
Abstract: General text on adapting homes and living environments for persons with dementia; applicable to home and other residential situations for adults with intellectual disabilities and dementia.

Cox, S.
Home Solutions: Housing & Support for People with Dementia
London: The Housing Associations Charitable Trust [78 Quaker Street, London, England E1 6SW; e/m: hact@hact.org.uk] (1998) 112 pp.
Abstract: Publication details some 10 case studies of housing options and accommodations for persons affected by dementia (and applicable to adults with intellectual disabilities). Models covered include: support in a person's own home, support in a shared home, specialist dementia support with communal facilities, and different types and levels of support on one site. Sections also deal with housing and support solutions for people with dementia from ethnic minority communities and the repair, remodeling, adaptation and renovation of ordinary housing. Case models contain full descriptions of settings and accommodations.

Davis, D.R.
A Parent's Perspective
In M.P. Janicki & A.J. Dalton (Eds.), Dementia, Aging, and Intellectual Disabilities. pp. 42-50
Philadelphia: Brunner-Mazel (1999)
Abstract: Book chapter that provides an account of the experiences of a family with an adult son with Down syndrome who eventually succumbs to dementia of the Alzheimer's type. Includes a discussion of the difficult early years of the son's life and the challenges the family faced as he aged. It also examines the family's problems in recognizing that their son was experiencing the onset of dementia and his gradual decline until his death at age 46.

Day, K., Carreon, D., & Stump, C.
The Therapeutic Design of Environments for People with Dementia: A Review of the Empirical Research
The Gerontologist, 2000, 40, 397-416
Abstract: Design of the physical environment is increasingly recognized as an important aid in caring for people with dementia. This article reviews the empirical research on design and dementia, including research concerning facility planning (relocation, respite and day care, special care units, group size), research on environmental attributes (noninstitutional character, sensory stimulation, lighting, safety), studies concerning building organization (orientation, outdoor space), and research on specific rooms and activity spaces (bathrooms, toilet rooms, dining rooms, kitchens, and resident rooms). The analysis reveals major themes in research and characterizes strengths and shortcomings in methodology, theoretical conceptualization, and application of findings.

Engdahl, J.M.K.
Alzheimer's Disease & Down Syndrome: A Practical Guide for Caregivers. 36 pp.
Bozeman, Montana: Author [723 South 13th Street, Bozeman, MT 59715] (1995)
Abstract: Training manual developed to provide primary information about care practices for parents and other primary carers of adults with Down syndrome affected by Alzheimer's disease. Covers, in brief format, recognizing signs and symptoms, diagnostic advice, care management practice (communication, dealing with problem behaviors, helping with activities of daily living, promoting alternative activities) and help for carers.

ENIDA
Face to Face: Respectful Coping with Dementia in Older People with Intellectual Disability 52 minutes
Working Group on Coping with Dementia in Older People with Intellectual Disability, European Network on Intellectual Disability and Ageing [ENIDA - c/o Patricia Noonan Walsh, Ph.D., Director, Centre for the Study of Developmental Disabilities, University College Dublin, Belfield, Dublin 4, IRELAND -- e-mail: patricia.walsh@ucd.ie] (2000)
Abstract: A 52-minute video with an accompanying information booklet, which uses a number of case vignettes from France, Belgium and the Netherlands to illustrate the various symptoms and stages of dementia among older people with intellectual disability. Examples of practices to promote "respectful coping" with dementia, death and dying on the part of direct support professionals and clinicians are presented. Devised for staff training and development, Face to Face may be viewed in short segments. A version with English subtitles and English booklet is available in formats suitable for Europe and for North America. Developed with funding and support from: ENIDA, Fondation de France, the European Union, and University College Dublin, Ireland.

Foundation for People with Learning Disabilities
Down's Syndrome and Dementia - Briefing for Commissioners
London: The Foundation for People with Learning Disabilities [c/o Mental Health Foundation, 20/21 Cornwall Terrace, London, England NW1 4QL; e/m mhf@mhf.org.uk; www.learningdisabilities.org.uk] (February 2001) 8 pp.
Abstract: Backgrounder document, written for funders of services in the United Kingdom, outlines the epidemiology of dementia and Down's syndrome and identifies key support services necessary as part of a package of local services to be established for persons affected by dementia and intellectual disabilities (ID). While titled for dementia and Down's syndrome applicable for all persons with ID. Written in brief style, covers main issues and funding considerations and serves as an excellent planning tool for establishing services. Also covers basic clinical diagnostic information and basis for care management decision making. Routes the reader to associated organizations for further information

Fray, M.T.
Caring for Kathleen: A Sister's Story about Down's Syndrome and Dementia.
Kidderminster, United Kingdom: British Institute of Learning Disabilities [BILD, Wolverhampton Road, Kidderminster, Worcestershire, UK DY10 3PP -- www.bild.demon.co.uk] (2000) 44 pp.
Abstract: Biographical monograph on the aging and eventual decline and death of a woman with Down syndrome as told by her sister. Provides many insights in service barriers and successes, while also providing a vivid case example of how Alzheimer's disease affects a family carer of a person with an intellectual disability.

Gitlin, L.N., and Corcoran, M.
Making Homes Safer: Environmental Adaptations for People with Dementia.
Alzheimer's Care Quarterly, 2000, 1(1), 50-58
Abstract: Evaluating the safety of the home environment is an important component of clinical care for persons with dementia. This article discusses safety concerns for persons with dementia living at home alone or with family members, specific modifications to the physical environment to address these issues, and guiding principles for implementing environmental changes. A wide range of environmental strategies can be introduced to maximize home safety. Different adaptations may need to be implemented with progressive memory loss thus necessitating periodic reevaluation of the home.

Hammond, B., & Beneditti, P.
Perspectives of a Care Provider
In M.P. Janicki & A.J. Dalton (Eds.), Dementia, Aging, and Intellectual Disabilities. pp. 32-41
Philadelphia: Brunner-Mazel (1999)
Abstract: Book chapter that provides a descriptive chronology of a middle-aged woman with Down syndrome who, once diagnosed with Alzheimer disease, follows a classic course of decline and eventual debilitation and death. Staff of her residence chronicled the progression of her dementia and provide some insights into the care management practices used in providing for her care. The authors place the course of her disease in perspective and offer comments on the stresses and strains on agency resources. Suggestions are offered for agencies facing similar challenge in providing day to day care for adults with dementia.

Hellen, C.R.
Alzheimer's Disease - Activity-Focused Care (2nd ed.)
Boston: Butterworth-Heinemann (1998) 436 pp.
Abstract: A 13-chapter text that provide voluminous information on developing and provision of activities for persons affected by Alzheimer's disease and related dementias - with application to persons with intellectual disabilities. Written from a practitioner viewpoint, it is designed to promote an individual's cognitive, physical and psychosocial well-being. It includes forms and profiles for use by program personnel, presents a holistic intervention program, features content on refocusing activities for physically combative or violent situations. Contains chapters on communication, daily living care activities, aiding at mealtimes, facilitating physical wellness (mobility and exercise), addressing dementia induced behaviors, creating meaningful activities for daily life, and aiding in terminal care, among others.

Holland, A.J.
Ageing and its consequences for people with Down’s syndrome
Fact Sheet Series - Learning about intellectual disabilities and health
Accessed 24 August 2004 at
http://www.intellectualdisability.info/lifestages/ds_ageing.htm
Down Syndrome Association (UK) and the Department of Mental Health & Learning Disability at St. George’s Hospital Medical School, University of London.
9 pp.
Abstract: Fact sheet outlines the evidence which suggests that ageing and the problems of old age are particularly relevant to people with Down syndrome as some of these age-related problems develop earlier in life than would normally be the case. Topics covered include: aging and the brain, aging and dementia, behavioral features of dementia in people with Down syndrome, apparent decline in later life - cases to consider, difficulties in detecting dementia in people with intellectual disabilities, differential diagnosis - which conditions mimic dementia, common causes of decline in later life in people with Down syndrome, genetic mechanisms, treatment, supporting the individual, and the future.

Holland, A.J., Karlinsky, H. & Berg, J.M.
Alzheimers Disease in Persons with Down Syndrome: Diagnostic and Management Considerations
In J.M. Berg, H. Karlinsky, A.J. Holland (Eds.), Alzheimers Disease, Down Syndrome, and Their Relationship. pp. 96-114
Oxford: Oxford University Press (1993)
Abstract: Book chapter that examines the implications of Alzheimer's disease for adults with Down syndrome, including assessment and diagnosis and specialty service provision. Authors note that assigning a tenable diagnosis of Alzheimer disease requires careful and comprehensive data assembly, including medical history, clinical examination, neuropsychological assessment and laboratory investigations. Once the diagnosis is established, effective ongoing management should focus on supporting not only the affected individual (including advocacy for his or her rights) but also the family and professional carers. During the course of the illness various medical, psychiatric and psychological interventions can be helpful as can changes in the environment. A wide range of services for persons with Down syndrome who develop Alzheimer's disease makes it possible for affected individuals, despite deterioration, to remain in the family home or in community residential settings. Authors proffer some general suggestions for services and adaptations.

Janicki, M. P., Heller, T., Seltzer, G., & Hogg, J.
Practice Guidelines for the Clinical Assessment and Care Management of Alzheimer's Disease and Other Dementias among Adults with Intellectual Disability
Journal of Intellectual Disability Research, 1996, 40, 374-382
Abstract: The AAMR/IASSID practice guidelines, developed by an international workgroup, provide guidance for stage-related care management of Alzheimer's disease, and suggestions for the training and education of carers, peers, clinicians, and program staff. The guidelines suggest a three step intervention activity process, that includes: (1) recognizing changes, (2) conducting assessments and evaluations, and (3) instituting medical and care management. They provide guidance for public policies that reflect a commitment for aggressive care of people with Alzheimer's disease and intellectual disability, and avoidance of institutionalization solely because of a diagnosis of dementia. [This report is available also on www.aamr.org

Janicki, M.P., McCallion, P., & Dalton, A.J.
Supporting People with Dementia in Community Settings
In M.P. Janicki & A.F. Ansello (Eds.), Community Supports for Aging Adults with Lifelong Disabilities. pp. 387-413
Baltimore, Maryland: Paul H. Brookes Publishing (2000)
Abstract: Due to the "greying" of the nation's population, dementia associated with Alzheimer's disease and other causes, has become another challenge for providers of services to adults with intellectual disabilities. In this book chapter, the authors explore the factors, policies, and support structures that can help agencies provide continued "aging-in-place" dementia-capable care, develop "in-place progression" dementia specific programs, or chose alternative care settings. It also explores some features of dementia-related behaviors that may need to be taken into account in program design and makes suggestions for staff training and planning for dementia programs.

Janicki, M.P., McCallion, P., & Dalton, A.J.
Dementia-Related Care Decision-Making in Group Homes for Persons with Intellectual Disabilities
Journal of Gerontological Social Work, In press.
Abstract: The number of age-associated pathologies is increasing, with the increase in the number of elderly persons. One such age-associated condition, Alzheimer's disease and related dementias, affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia and their impact on planning for community care of adults with ID. It also examines emerging community care models that provide for "dementia capable" supports and services. Two models, "aging in place," and "in place progression" are examined with regard to care practices and critical agency decision making. An approach, the ECEPS model, for responding to dementia is offered.

Janicki, M.P. & Dalton A.J.
Care Management, Diagnostic and Epidemiologic Considerations in Adults with Intellectual Disabilities and Alzheimer Disease
British Journal of Developmental Disabilities, 1996, 42(Supplement), s84
Abstract: Review of the process and outcome of the Invitational International Colloquium on Alzheimer Disease among Persons with intellectual Disabilities held in Minneapolis, Minnesota (USA) and the subsequent development of a set of international practice guidelines and reports on the assessment, epidemiology, and care management of adults with intellectual disabilities affected by dementia.

Janicki, M.P., & Dalton, A.J.
Dementia in Developmental Disabilities
In N. Bouras (Ed.), Psychiatric and Behavioral Disorders in Developmental Disabilities and Mental Retardation (1999) pp. 121-153
Cambridge: Cambridge University Press
Abstract: This book chapter provides a brief overview of the current status of knowledge about dementia and its relationship to intellectual disability, touching on current developments in the evaluation of possible comorbid psychiatric, medical and age-associated conditions. The clinical presentation of dementia is examined as well as relevant contemporary issues related to diagnosis, assessment, and care management. Lastly, questions of dementia policy and suggestions for training programs on dementia and intellectual disability are addressed.

Janicki, M.P., & Dalton, A.J.
Dementia and Public Policy Considerations
In M.P. Janicki & A.J. Dalton (eds.), Dementia, Aging, and Intellectual Disabilities (1999) pp. 388-414
Philadelphia: Brunner-Mazel
Abstract: This book chapter examines a number of the major public policy considerations related to the aging of adults with intellectual disabilities who evidence change due to dementia. Specifically addressed is the changing structure of at-risk adult populations with intellectual disabilities in service systems, the programmatic and policy issues raised by providers attempting to cope with these changes, needs for further training, education and dissemination of information on aging, and lastly, the challenges and policy imperatives to be confronted with the new millennium.

Janicki, M.P., & Dalton, A.J.
Dementia, Aging, and Intellectual Disabilities: A Handbook 488pp.
Philadelphia: Brunner-Mazel [http://www.taylorand francis.com] (1999)
Abstract: Abstract: 21 chapter text on dementia issues and intellectual disabilities. Six parts: Introduction, Biomedical considerations, Assessment considerations, Clinical considerations, Program considerations, and Education and policy considerations. Text provides most up-to-date information available about Alzheimer's disease and related dementias as they affect persons with mental disabilities. Text examines biology and physiology of dementia, neurological and medical complications associated with dementia, best practices to meet the needs of aging persons with intellectual disabilities, policy issues raised by the growing number of older adults with ID, and case studies of affected individuals. Contains glossary of terms, and appendices with AAMR/IASSID practice guidelines for dementia diagnosis and care management in adults with intellectual disabilities, as well as Newroth & Newroth guidelines for coping with Alzheimer's disease in persons with Down syndrome.

Janicki, M.P., & Dalton, A.J.
Prevalence of Dementia and Impact on Intellectual Disability Services
Mental Retardation, 2000, 38, 277-289.
Abstract: A statewide survey, conducted to ascertain the administrative prevalence of dementia in adults with an intellectual disability, found a prevalence of about 3% of the adult service population over the age of 40 years (a rate of 28/1000), 6.1% of the population over the age of 60 years, and 12.1% of the population over the age of 80 years (or rates of 68.7/1000 and 121.3/1000, respectively). The rate of dementia was consistent with that for adults in the general population, except for those adults with Down syndrome (who made up a third of the overall group) who had a much higher rate: 22.1% among adults age 40 and older and 56.4% among adults age 60 and older. Onset was observed to occur in the mid-60s (early 50s for Down syndrome). Alzheimer-type dementia was the most frequent diagnosis. Late-onset seizures were reported in about 12% of the cases. With the occurrence of dementia expected to rise proportionately with the increase of longevity among adults with an intellectual disability, it is clear that care systems will have to raise the "index of suspicion" among staff and families, adapt to become "dementia capable," and improve their diagnostic and technical resources, as well as their community-based care management supports.

Kerr, D.
Down's Syndrome and Dementia 76 pp.
Birmingham, UK: Venture Press (1997)
Abstract: Text providing a comprehensive review of issues and practices relative to adults with Down syndrome affected by Alzheimer's disease. Covered are a range of topics related to care management, including assessment of need, communication, creating a therapeutic environment, how to maintain skills, and dealing with challenging behaviors. Also covered are specific interventions and supporting carers.

Koenig, B.R.
Aged and Dementia Care Issues for People with an Intellectual Disability: Best Practices (vol. 2). 80 pp.
Brighton, South Australia: MINDA, Inc. (1995)
Abstract: Text covering a range of useful topics related to service provision for dementia among persons with intellectual disabilities. Highly detailed chapters cover health issues, physical decline, behavioral changes, and social aspects. Specific remedial information is provided on communication issues and adapting the environment. A chapter also addresses counseling strategies, examining a diverse range of approaches.

Lynggard, H., & Alexander, N.
'Why are my friends changing?' Explaining dementia to people with learning disabilities
British Journal of Learning Disabilities, 2004, 32(1), 30-34.
Abstract: Many publications seek to explain the causes and effects of dementia to the general population and there is evidence of the benefit of supporting carers and of establishing support groups. However, there is much less published material aimed at people with intellectual disabilities, and little focus on the specific needs of people who share their homes and lives with other people with learning disabilities who develop dementia. This article, based on group work, describes residents who had expressed bewilderment at the gradual changes they were witnessing in two of their housemates with dementia with whom they had shared a home and friendships over many years. Employing a wide range of visual aids, equipment, role plays and exercises, we sought to make the explanation of dementia as accessible and concrete as possible. The group also provided a forum for the residents to talk about the effects of living with others who develop dementia. Evaluation showed how a relatively short intervention can result in positive changes for both the people with learning disabilities who develop dementia and their peers.

Marler, R., & Cunningham, C.
Down's Syndrome and Alzheimer's Disease: A Guide for Carers. 39 pp.
London: Down's Syndrome Association [155 Mitcham Road, London, UK SW17 9PG] (1994).
Abstract: This booklet for community carers and agency staff covers some of the fundamentals concerning adults with Down syndrome and Alzheimer's disease, including information on obtaining diagnoses, approaches to care management, and securing services in the UK. Contains some vignettes and a small glossary and references.

May, H.L., Fletcher, C., Alvarez, N., Zuis, J., & Cavallari, S.G.
Alzheimers Disease and Down Syndrome: A Manual of Care
Wrentham, Mass.: Alzheimers Committee of Wrentham Developmental Center (1996) 89 pp.
Abstract: A 9-chapter staff training manual covering the basic issues related to the occurrence of Alzheimer's disease in adults with Down syndrome. Chapters include an introduction, Alzheimer's disease and Down syndrome, assessment, family and guardian considerations, early Alzheimer's disease, mid-stage Alzheimer's disease, feeding and nutrition concerns, and understanding difficult behaviors. Appendix contains a "Level of Capacity Scale," and table outlining implications and treatment suggestions for persons with intellectual disabilities affected by dementia.

McCallion, P.
Maintaining Communication
In M.P. Janicki & A.J. Dalton (eds.), Dementia, Aging, and Intellectual Disabilities pp. 261-277
Philadelphia: Brunner-Mazel (1999)
Abstract: This book chapter is based on the premise that progression of dementia among persons with intellectual disabilities appears to be similar to that in the general population. Therefore, it explores how existing service models and programs may be adapted for the population with intellectual disabilities. A five part program, Maintaining Communication and Independence (MCI), is proposed which adapts an existing program for persons with dementia to better meet the needs of persons with intellectual disabilities. The five parts to MCI are: (1) strengths identification and deficit assessment, (2) environ-mental modification, (3) good communication, (4) memory aids, and (5) taking care of the carer.

McCallion, P., & Janicki, M.P.
Intellectual Disabilities and Dementia (Computer-based Course) 2 CD-Rom set
Center for Excellence in Aging Services, School of Social Welfare, Richardson 208, University at Albany, Albany, New York 12222 (2002)
Abstract: 2 disk set - usable on Windows 9.X/2000 on 233 MHz Pentium or faster with audio/video playback. Instructional course on aging, intellectual disabilities and dementia. Contains digital video version of "Dementia and People with Intellectual Disabilities- What Can We Do?"

McCarron, M.
Some Issues in Caring for People with the Dual Disability of Down's Syndrome and Alzheimer's Dementia
Journal of Learning Disabilities for Nursing, Health and Social Care, 1999, 3(3), 123-129
Abstract: Virtually all individuals with Down's syndrome over the age of 35 years have neurological changes characteristic of Alzheimer's disease. It has become increasingly recognized that people with Down's syndrome and dementia have very special needs, and those who care for them require specialist knowledge and skills. This paper aims to explore some important issues in caring for persons with this dual disability. It commences with a brief outline on the prevalence of dementia in this population. Diagnostic issues and the clinical presentation of dementia in persons with Down's syndrome are reviewed. In an attempt to help staff respond to the opportunities and challenges they encounter, issues discussed, include: promoting well-being, developing a shared vision on which to build practice, mealtimes -- a therapeutic event, reality orientation and validation therapy, communication, activity and entertainment.

McCarron, M., Gill, M., Lawlor, B., & Beagly, C.
A Pilot Study of the Reliability and Validity of the Caregiver Activity Survey - Intellectual Disability (CAS-ID)
Journal of Intellectual Disability Research, 2002, 46, 605-612
Abstract: Authors undertook to amend the Caregiver Activity Survey (Davis et al., 1997) and apply it for use with caregivers of persons with intellectual disabilities. Under this study, the CAS-ID was tested with 30 adults and convergent validity was assessed by comparing the CAS-ID with other measures of cognitive and functional impairment of adults with intellectual disabilities. Final version of the CAS-ID contains 8 items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care-related activities, and supervision/behavior management. Authors content that the CAS-ID has the potential for identifying and measuring care and resource requirements for people experiencing decline associated with dementia.

McKenzie, K., Harte, C., Patrick, S., Matheson, E., & Murray, G.C.
The Assessment of Behavioural Decline in Adults with Down's Syndrome
Journal of Learning Disabilities, 2002, 6, 175-184
Abstract: Article reports study the examined two methods of using the Vineland Adaptive Behavioral Scales (VABS) to measure behavioral change in adults with Down syndrome who were surmised to be at-risk of Alzheimer's disease. The first approach used the VABS within a semi-structured interview and all areas of behavioral change identified by staff were noted. The second approach used the basal rule of the VABS as indicated in the Scales' manual. Comparison of the two approaches indicated that using the second approach highlighted significant decline in scores (for adults meeting the criteria for "probable Alzheimer's disease) on a number of domains between baseline and 12-24 months. One limitation of this approach that was noted was that this scoring method appeared to miss more subtle changes on behavior, which may be indicative of early Alzheimer's disease - which were picked up by the first approach. Authors recommend flexibility in using the VABS for assessment purposes and caution researchers to be explicit in reporting how the VABS was used in studies assessing dementia.

Millichap, D., Oliver, C., McQuillan, S., Kalsy, S., Lloyd, V., & Hall, S.
Descriptive functional analysis of behavioral excesses shown by adults with Down syndrome and dementia.
International Journal of Geriatric Psychiatry, 2003, 18, 844-854
Abstract: The study examined the hypothesis that a functional relationship exists between social environmental events and behavioral excesses in individuals with Down syndrome and dementia. Design: A case-series design was employed (n = 4) using an direct observation-based descriptive functional assessment procedure. Methods: Observations were conducted in the natural environments of four participants over periods ranging from 11 to 15.4 hours. Data were collected on non-verbal and verbal behavioral excesses, appropriate engagement and verbal interaction with others. Social environmental events observed including both staff and peer behavior. Results: Analysis of co-occurrence for behavioral excesses and social environmental events indicated significant relationships for some behaviors consistent with operant reinforcement processes. Sequential analysis showed that changes in the probability of social contact occurred in the period directly preceding and following verbal behaviors. Conclusions: Results support the hypothesis that, consistent with literature for older adults with dementia in the general population, some behavioral excesses were functional in nature and not randomly occurring events. No relationship was found between appropriate engagement and staff.

Moss, S., Lambe, L., & Hogg, J.
Physical and Mental Health
Ageing Matters - Pathways for Older People with Learning Disabilities: Manager's Reader. pp. 41-60
Kidderminster: British Institute of Learning Disabilities [Wolverhampton Road, Kidderminster, Worcestershire DY10 3PP United Kingdom] (1998)
Abstract: This unit, one of six that is used for training staff, covers briefly some of the key issues related to physical and mental health, and touches on dementia. Although not specifically developed for care management of adults with dementia, the text, in total, can be a useful resource for staff working in care settings when one or more of the adults in the setting are affected by dementia.

New York State Developmental Disabilities Planning Council
When People with Developmental Disabilities Age 18 minutes
New York State Developmental Disabilities Planning Council [155 Washington Avenue, Albany, New York 12222] (1992).
Abstract: A 18-minute video outlining the major physical and social change issues affecting adults with intellectual and developmental disabilities as they age, including a brief mention of Alzheimer's disease and Down syndrome. Available in video format from the address shown above. Also available as CD-ROM from Mary Mercer, Community Staff Training Director, North Dakota Center for Persons with Disabilities, Minot State University, Box 131, Minot, ND 58703.

New York State Developmental Disabilities Planning Council
Dementia and People with Intellectual Disabilities - What Can We Do? 23 minutes
New York State Developmental Disabilities Planning Council [155 Washington Avenue, Albany, New York 12222] (2001).
Abstract: An instructional video which covers the basics of how dementia affects adults with intellectual disabilities, and provides information on diagnostics and suggestions on providing supports and services in community care settings. Produced by the University at Albany, this video can serve as primer on dementia and intellectual disabilities and provides information on basic design and service issues. Available in VHS and CD-Rom format.

Newroth, S., & Newroth, A.
Coping with Alzheimer disease: A growing concern. 28 pp.
Downsview: Ontario: National Institute on Mental Retardation (Kinsmen NIMR Building, York University Campus, 4700 Keele Street, Ontario, Canada, M3J lP3) (1981)
Abstract: Monograph describing one residential program's experience in caring for persons with Down syndrome who developed Alzheimer's disease; includes a chart of observations and guidelines for care. The guidelines are reproduced as an appendix in Janicki & Dalton (1999).

Noelker, E.A. & Somple, L.C.
Adults with Down syndrome and Alzheimer's
In K.A. Roberto (Ed.), The Elderly Caregiver: Caring for Adults with Developmental Disabilities. pp. 81-92
Newbury Park: SAGE Publications (1993)
Abstract: Book chapter providing a brief summary of significant assessment and care issues affecting adults with Down syndrome who have Alzheimer's disease. Noted are the needs for education of carers and families, as well as specialty care provision and community services.

Oliver, C., Crayton, L., Holland, A., & Hall, S.
Cognitive deterioration in adults with Down syndrome: Effects on the individual, caregivers, and service use
American Journal on Mental Retardation, 2000, 103, 455-465
Abstract: Individuals with Down syndrome (N = 49) who had participated in serial neuropsychological assessments were assigned to one of three groups comparable in level of premorbid intellectual disability: (1) those showing cognitive deterioration, (2) those comparable in age but not showing cognitive deterioration and (3) those not showing cognitive deterioration but younger. Those experiencing cognitive deterioration were less likely to receive day services, had more impoverished life experiences, and required more support compared to groups without cognitive deterioration. When age was controlled for, cognitive deterioration was significantly positively associated with carer difficulties and service use and negatively associated with life experiences for the individual. Results suggest a potential role for carer difficulties in influencing life experiences of adults with Down syndrome showing cognitive decline.

Olsen, R.V., Ehrenkrantz, E., & Hutchings, B.L.
Creating the Movement-Access Continuum in Home Environments for Dementia Care
Topics in Geriatric Rehabilitation, 1996, 12(2): 1-8
Abstract: Since the majority of people with Alzheimer's disease receive some care at home, the environment of that home must be safe and supportive. In-depth interviews of 90 "seasoned" caregivers identified tactics for creating these settings through home modifications and technology. A successful modification strategy follows a three-stage movement-access continuum that responds to the disease course -- assistance, restriction with compensation, and wheelchair accessibility. Approaching home modifications along this continuum encourages independence and movement when appropriate while providing safety and control. With a sensitive and ongoing modification strategy, the home environment can become an asset rather than a liability for caregiving.

Olsen, R.V., Ehrenkrantz, E., & Hutchings, B.
Creating Supportive Environments for People with Dementia and Their Caregivers through Home Modifications
Technology and Disability, 1993, 2(4): 47-57
Abstract: Article examines what caregivers did to enhance or modify their homes when a spouse or other family member had dementia. Authors address controlling access (using locking techniques, blocking access with gates and partial doors, and the like, as examining modifications to kitchens, bathrooms, and furniture. Data showed that many built ramps, double railings, hand grips, as well as extending landings for ease of wheelchair use, reducing riser heights, removing steps, and installing electric chair lifts. Home owners also reconfigured space and rooms. Authors conclude that home owners modified spaces to increase access and independence in some life areas and to limit or curtail access in others. Article is a good source of information for how the process and outcome of families tackle home modifications

Olsen, R.V., Ehrenkrantz, E., & Hutchings, B.
Homes That Help: Advice from Caregivers for Creating a Supportive Home (Alzheimer's and Related Dementias) 77 pp.
Newark, New Jersey: New Jersey Institute of Technology [Architecture and Building Science Research Group, School of Architecture, NJIofT, University Heights, Newark, New Jersey 07102-1982] (1993)
Abstract: Manual that details examples of how to adapt a home for persons affected by dementia, covering care management techniques, physical adaptations, and personal monitoring strategies.

Persaud, M., & Jaycock, S.
Evaluating Care Delivery: the Application of Dementia Care Mapping in Learning Disability Residential Services
Journal of Learning Disabilities, 2001, 5(4), 345-352
Abstract: Measurement and evaluation in intellectual disability services is still in its infancy. This report explores how good practice in relation to quality of care initiatives in dementia care transpose into intellectual disability settings. The authors applied dementia care mapping (DCM) to evaluate its effectiveness and efficiency in generic intellectual disability settings. Results showed that the application of the method to be partially successful. The data produced compared favorably in quality, quantity and detail with those collected in dementia care areas. Analysis of data revealed great potential for the method; however, result indices and coding frameworks need to be modified and adapted in future studies. No subject had dementia..

Robinson, A., Spencer, B., & White, L.
Understanding Difficult Behaviors: Some Suggestions for Coping with Alzheimer's Disease and Related Illnesses 80 pp.
Geriatric Education Center of Michigan (Alzheimer's Education Program, Eastern Michigan University, P.O. Box 981337, Ypsilanti, MI 48198-1337; www.emich.edu/public/alzheimers) (1999 rev.)
Abstract: Manual format publication providing detailed information on addressing difficult behaviors and understanding their causes and environmental relationships. Specific detailed sections on angry, agitated behavior; hallucinations and paranoia; incontinence; problems with bathing, dressing, eating, sleeping and wandering; repetitive actions, screaming and verbal noises, and wanting to go home. Appendix contains selected readings, and audio-visual materials. Does not specifically focus on intellectual disabilities, but is good generic resource.

Scottish Down's Syndrome Association
What Is Dementia? - A Booklet about Dementia for Adults Who Have a Learning Disability. 14pp
Edinburgh: Scottish Down's Syndrome Association [158-160 Balgreen Road, Edinburgh, Scotland EH11 3AU; e/m: info@sdsa.org.uk; www.sdsa.org.uk] [n.d.]
Abstract: Written for the Scottish Down's Syndrome Association by Diana Kerr and Mo Innes this A4 size booklet is designed to explain dementia and its nuances to persons with intellectual disabilities (termed "learning disabilities in Scotland). Using drawings and easy language this booklet covers many of the symptoms and behaviors classically associated with Alzheimer's disease

Service, K.P., Lavoie, D. Herlihy, J.E.
Coping with Losses, Death and Grieving
In M.P. Janicki & A.J. Dalton (eds.), Dementia, Aging, and Intellectual Disabilities. pp. 330-351
Philadelphia: Brunner-Mazel (1999)
Abstract: This book chapter uses a composite case to demonstrate strategies to address the issues related to losses and death for people with mental retardation and the diagnosis of dementia and for their families and staff. Dealing with the diagnosis and the changes are explained in the framework of the stages of death and dying as developed by Kubler-Ross. The responses to the losses of dementia which are manifested by affected individuals and members of their personal networks are reflective of a number of factors. The dilemma related to personal value systems, professional roles, and philosophies of care is explored in the context of ethical concerns. The impact of program considerations such as rules, regulations, policies, and economics is examined. Bereavement work for peers and housemates can be further developed for carers, family, and staff. Recommendations for research and interventions for public policy are given.

The Arc
Developmental Disabilities and Alzheimer Disease: What You Should Know. 43 pp.
Silver Spring, Maryland: The Arc of the United States [1010 Wayne Avenue, Suite 650, Silver Spring, MD 20910 -- www.TheArc.org] (1995)
Abstract: A booklet covering some of the fundamentals concerning adults with intellectual disabilities and Alzheimer's disease including what is Alzheimer's disease, its course and outcome, diagnostic suggestions, care considerations, and how to obtain assistance. Contains resource list and glossary.

Tyler, C.V., & Shank, J.C.
Dementia and Down Syndrome
The Journal of Family Practice, 1996, 42(6), 619-621
Abstract: Case report of a 43-year old woman with Down syndrome and progressive decline over three years that was attributed to dementia of the Alzheimer's type. Authors describe the medical conditions evident during decline, whilst living with her family. Identifies typical features associated with decline for persons with Down syndrome and defines areas for concern during examinations by physicians.

Udell, L.
Supports in Small Group Home Settings
In M.P. Janicki & A.J. Dalton (eds.), Dementia, Aging, and Intellectual Disabilities. pp. 316-329
Philadelphia: Brunner-Mazel (1999)
Abstract: This book chapter covers what organizations that provide residential supports to adults with an intellectual disability need to consider in terms of planning and implementing program changes. Covered are areas that examine the nature of dementia and its possible impact on service provision, Its particular focus is on how agencies that decide to support people with dementia in small group home settings can accommodate their organizational and operational structure and offers insight ion the perspectives and questions that agencies need to consider. Suggestions are offered on how to address some of the difficulties that organizations will encounter.

University of Maryland School of Medicine
Hi Buddy... The Developmentally Delayed Individual with Alzheimer Disease
19 minutes
VideoPress, the University of Maryland School of Medicine [100 North Greene Street, Suite 300, Baltimore, Maryland USA (1 800 328 7450; fax: 1 410 706 8471; www.videopress.org)] Abstract: Video on the subject of Alzheimer's disease and adults with developmental disabilities.

University of Stirling
Building Networks - Conference on Learning Disabilities and Dementia 58 pp.
Dementia Services Development Centre, Department of Applied Social Science, Faculty of Human Sciences, University of Stirling, Stirling, Scotland FH9 4LA (2000).
Abstract: Proceedings of conference on community dementia care and people with intellectual disabilities held in Dunblane, Scotland (November 11, 1999). The report summarizes the main points made by the numerous speakers at the conference. The conference highlighted the need for wider awareness among managers and service personnel of the need for (and for resources and developing expertise on) training staff in residential and home support services on responding to the needs of people with intellectual disabilities who have dementia. The 16 papers range from the theoretical to the practical.

Walker, C.A., & Walker, A.
Uncertain Futures: People with Learning Difficulties and Their Ageing Family Carers 54 pp.
Brighton, UK: Pavilion Publishing (1998)
Abstract: This monograph provides an overview of research, policy and practice relating to service responses to adults with learning difficulties living at home with older family carers in the UK. The authors' premise is that as life expectancy increases, a growing proportion of people with learning difficulties continues to live with family members, most frequently parents, whose caring role is being extended into their own advanced old age. Highlighted are some of the issues raised by service users, carers and service providers, including care for someone with diminishing abilities. The text argues that there is urgent need for the paid service sector to work with families to provide the necessary support and planning to take the uncertainty out of the future.

Watchman, K.
Critical issues for service planners and providers of care for people with Down's syndrome and dementia
British Journal of Learning Disabilities,31(2), 81-84
Abstract: This discussion paper raises critical issues that need to be addressed along with suggestions as to how they may be met with. Author notes that the role of service planners and providers of care is one that cannot be understated while considering the future needs of people with Down's syndrome and dementia. Discussed are appropriateness of accommodations, care management, diagnosis, and training.

Warner, M.L.
The Complete Guide to Alzheimer's-Proofing Your Home. 470 pp.
West Lafayette, Indiana: Purdue University Press (1998)
Abstract: General text on adapting homes and living environments for persons with dementia; applicable to home and other residential situations for adults with intellectual disabilities and dementia.

Whittick, J.E.
Dementia and Mental Handicap: Attitudes, Emotional Distress and Caregiving
British Journal of Medical Psychology, 1989, 62, 181-189
Abstract: Against the current climate of hospital closure programs and community care, attitudes to caregiving were examined in three groups of carers, namely mothers caring for a mentally handicapped child, mothers caring for a mentally handicapped adult and daughters caring for a parent with dementia. An 'attitude questionnaire' was developed by the author and administered, postally, to the three groups. Daughters were found to be more likely than the mothers to see their caring role in a negative way and were more inclined to favor institutional care. Possible reasons for this are discussed. The relationship between attitudes and emotional distress (as measured by the GHQ-30) were also examined for the sample as a whole. Negative and pro-institutional attitudes towards the caregiving situation were associated with elevated levels of emotional distress. Implications at both a local and a national level for all those involved with carers are discussed in the light of these findings.

Woods, R.T., Moniz-Cook, E., Lliffe, S., Campion, P., Vernooij-Dassen, M., Zanetti, O., & Franco, M.
Dementia: Issues in Early Recognition and Intervention in Primary Care
Journal of the Royal Society of Medicine, 2003, 96, 320-324
Abstract: Generic article about the need for quality and accurate screening and assessment of adults suspected of showing signs of Alzheimer's disease and the need for psychosocial interventions and family carer supports. Authors note need for better training of medical practitioners who may be screening for dementia, indicating that there is a need for timely detection and diagnosis that will prevent crises, facilitate adjustment and provide access to treatments and supports.



This is a working document. The PCAD Project is not responsible for omissions or errors. The PCAD Project is funded by a grant from the Rehabilitation Research and Training Center on Aging with Intellectual Disabilities, which is funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education under grant number H133B980046. "The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the U.S. Department of Education." This bibliography may be copied and distributed with attribution.


For comments, additions or information, contact
M. Janicki Janickimp@aol.com
PCAD Project - Richardson 280
University at Albany
Albany, NY 12222 USA
E/m: dementcare@aol.com
v.7 (5/8/02)