Principal Investigator: Dr. Eric Smith Co-Investigators: Dr. Theresa Green Dr. David Hogan Dr. Colleen Maxwell Dr. Dawn Pearson Dr. Pamela Roach Ms. Anna Charlton Research Coordinator and Assistant: Tessa Kleissen Angela Zwiers

Overview

Background

Purpose

Method

Results

Discussion

Conclusion

Moving Forward

“Of all the things I’ve lost, I miss my mind

the most.” -Mark Twain

Dementia

Dementia characterized(1)… Diagnosis: DSM-IV(2), ICD-10(3), NINCDS/ADRDA(4)

Increasing age related correlation with Dementia (65+)(5-7)

Drive for service planning and research priorities

What about the younger generations? (<65)

[Background]

.

Early Onset Dementia (EOD) Defining EOD… - ‘Young’ onset dementia

Prevalence in UK: 35/100,000 (age 45-64)(8) Multiplied by 2 every 5 years(8)

Estimated prevalence in Canada:(9) Over 70,000 (<65) 50,000 (<60) 2,200 (<65) in Calgary

Characteristics:(10) Employed outside the home at the time of diagnosis Have dependent children or family Have significant financial burdens May be more physically fit or active than older patients

[Background]

The Impact

Caregiver paid working hours(10)

Caregiver burden:(20) stress(15-17) and distress(18-19), psychological and physical impact(10)

Need for tailored, age appropriate services for younger people with dementia(22, 23-25)

Need for tailored, age appropriate services for caregivers(21, 23-25)

[Background]

Aims

Purpose: Identify the needs of people with EOD of the Alzheimer’s type, to inform age-specific quality of life measures and development of support strategies for patients and caregivers in the early diagnosis phase.

Including individuals with EOD and LOD and their caregivers in this study will allow for a comparison of the concerns and needs of these two populations.

[Purpose]

What we are doing…

Participant Eligibility Criteria: Dementia diagnosis(2, 28, 29)

Age 50-64 (EOD), age ≥65 (LOD)

English speaking

Community dwelling

Living with caregiver

No co morbidities

No alternative cause of dementia other than Alzheimer’s Disease

Participants recruited from the Cognitive Neurosciences Clinic at Foothills Medical Centre

[Methods]

Quantitative Data

Collection and Analysis

Qualitative Data

Collection and Analysis

Compare or relate

Interpretation

Comparative Mixed Methods (quantitative & qualitative) Explore demographics and support needs of patients with EOD and LOD

How we are doing it… Data collection:

Surveys- standardized patient assessments(30-39)

1:1 and focus group interviews with EOD and LOD patients and caregivers

Individual interviews: n = 10-12 EOD patients and caregivers (40,41)

Focus Groups: 4 focus groups of 6-8 people

• 2 EOD groups, 2 LOD groups

Analysis: SPSS© and NVIVO 9©

Codes and interrelated themes(26)- a detailed view of participants(27)

[Methods]

Who Participated

[Results]

Quantitative Findings

[Results]

Qualitative Findings

[Results]

Loss •Independence •Personal time •Partner in marriage •Support/ •resources

Life & Self

•[single] parenting •Decreased work hours •Future planning •Acceptance of diagnosis •Financial concerns •Frustrations, exhaustion, uncertainty •Acquiring new knowledge and skills •Changes in personal quality of life

Quality of Life

•Safety concerns •Loss of sense of purpose, self worth •Change in marriage •Concern for future loved ones •Change in parent/child relationship

Path to Diagnosis •Acceptance of diagnosis •Loss of independence •Lack of support, resources

Preliminary Outcomes

Literature shows great variability in outcome and strategies utilized for caregiver interventions in dementia (40)

Effects are small (42)

Needs and issues unique to those under age 65: Age appropriate services and community programs

Age appropriate support options for both patient and caregivers identified

Research on caregiver interventions in EOD is extremely limited, and it is unknown if interventions designed for use in LOD samples are effective with EOD patients(43)

Emotional and psychosocial support for children/family

[Discussion]

Next Steps…

Development of patient/spouse information fact sheets outlining different cognitive and behavioral changes that may be experienced with EOD and current community support services.

With the EOD Support Group, formatting a position statement/proposal, to be presented to local health authorities and government in support of resources specific to the EOD group of patients and caregivers.

[Conclusion]

What might be an effective program idea? Interactive Web Page

Cell phone App

Community gatherings/ social groups

How far can awareness and education go?

What about the children?

Questions to Ponder…

[Moving Forward]

Questions or Comments?

Acknowledgements

Special thanks to: TM Kleissen, A. Zwiers and S. Gandhi for their help with interviews, analysis and preparation of presentation and poster materials

To the Cognitive Neuroscience Clinics for screening and access to EOD couples

And to the EOD Support Group for their stories

References 1.Harvey, R., Rossor, M., Skelton-Robinson, M. & Garralda, E. (1998). Young Onset Dementia: Epidemiology, cli-nical symptoms, family burden, support, and outcome.

NHS RFG045. http://dementia.ion.ucl.ac.uk. Accessed March 24, 2011.

2.American Psychiatric Association. 1994. Diagnostic and Statistical Manual for Mental Disorders (DSM-IV), 4th edn. American Psychiatric Association: Washington, DC.

3.World Health Organization. 1993. The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Cri-teria for Research. WHO: Geneva.

4.McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. (1984). Clinical diagnosis of Alz-heimer's disease: report of the NINCDS-ADRDA Work

Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology, 34(7), 939-944.

5.Rocca, W., Hofman, A., Brayne, C., Breteler, M., Clarke, M., et al. (1991). The prevalence of dementia in Europe: a collaborative study of 1980-1990 prevalence findings.

Annals of Neurology, 30(3), 381-390.

6.Kokmen, E., Naessens, J., & Offord, K. (1987). A short test of mental status: description and preliminary results. Mayo Clinic Proceedings, 62(4): 281-288.

7.Jorm, A., Korten, A., & Henderson, A. (1987). The prevalence of dementia : A quantitative intergration of the lite-rature. Acta Psychiactrica Scandianivica, 76(5) :465-479.

8.Harvey, R., Skelton-Robinson, M. & Rossor, M. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery &

Psychiatry, 74: 1206-1209.

9.Smetanin,P., Kobak, P., Briante, C., Stiff, D., Sherman, G., and Ahmed, S. (2010). Rising Tide: The Impact of De-mentia in Canada 2008 – 2038.

http://www.alzheimer.ca/english/rising_tide/rising_tide.htm

10.Luscombe, G., Brodaty, H., & Freeth, S. (1998). Younger people with dementia: Diagnostic issues, effects on ca-rers and use of services. International Journal of Geratric

Psychiatry, 13, 323-330.

11.Schneider, J., Murray, J., Banerjee, S., & Mann, A. (1999). EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--

Factors associated with carer burden. International Journal Of Geriatric Psychiatry, 14(8), 651-661.

12.Murray, J., Schneider, J., Banerjee, S., & Mann, A. (1999). EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: II--A

qualitative analysis of the experience of caregiving. Inter-national Journal Of Geriatric Psychiatry, 14(8), 662-667.

13.Coope, B., Ballard, C., Saad, K., Patel, A., Bentham, P., Bannister, C., Graham, C., & Wilcock, G. (1995). The prevalence of depression in the carers of dementia sufferers.

International Journal of Geriatric Psychiatry, 10, 237-242.

14.Baldwin, R. C. (1994). Acquired cognitive impairment in the presenium.Psychiatric Bulletin, 18, 463-46.

15.Delany, N. & Rosenvinge, H. (1995) Presenile dementia: Sufferers, carers and services. International Journal of Geriatric Psychiatry, 10, 597-601.

16.Sperlinger, D., & Furst, M. (1994). THE SERVICE EXPERIENCES OF PEOPLE WITH PRESENILE DEMENTIA: A STUDY OF CARERS IN ONE LONDON

BOROUGH. International Journal of Geriatric Psychia-try, 9(1), 47-50.

17. Freyne, A., Kidd, N., Coen, R., & Lawlor, B. A. (1999). Burden in carers of dementia patients: higher levels in ca-rers of younger sufferers. International Journal of

Geriatric Psychiatry, 14(9), 784-788.

18.Harvey, R., Roques, P., Fox, N., & Rossor, M. (1998). CANDID--Counselling and Diagnosis in Dementia: a natio-nal telemedicine service supporting the care of younger

patients with dementia. International Journal Of Geriatric Psychiatry, 13(6), 381-388.

19.Harvey, R., Roques, P., Fox, N., & Rossor, M. (1998). CANDID--Counselling and Diagnosis in Dementia: a natio-nal telemedicine service supporting the care of younger

patients with dementia. International Journal Of Geriatric Psychiatry, 13(6), 381-388.

20.Daker-White, G., Beattie, A., Gilliard, J., & Means, R. (2002). Minority ethnic groups in dementia care: a review of service needs, service provision and models of good

practice. Aging & Mental Health, 6(2), 101-108.

21.Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 7, Issue 2.

22.Roach, P., Keady, J., Bee, P., & Hope, K. (2008). Subjective experiences of younger people with dementia and their families: implications for UK research, policy and

practice. Reviews in Clinical Gerontology, 18(2), 165-172.

23.Barber, R. (1997). A SURVEY OF SERVICES FOR YOUNGER PEOPLE WITH DEMENTIA. International Journal of Geriatric Psychiatry, 12(9), 951-954.

24.Alzheimer’s Association International Conference on Prevention of Dementia, Washington, D.C., USA, June 18–21, 2005 Meeting Reports. CNS Drug Reviews, Vol. 11,

No. 3, pp. 335–338.

25.Beattie, A., Daker-White, G., Gilliard, J., & Means, R. (2004). 'How can they tell?' A qualitative study of the views of younger people about their dementia and dementia

care services. Health & Social Care in the Community, 12(4), 359-368.

26.Cresswell, J. & Clark, V., (2011). Designing and Conducting Mixed Methods Research (2nd ed.). Thousand Oaks, CA : Sage.

27.Cresswell, J. (1998). Qualitative Inquiry and Research Design : Choosing Among Five Traditions. Thousand Oaks, CA : Sage.

28.Tierney MC, Fisher RH, Lewis AJ, Zorzitto ML, Snow WG, Reid DW, Nieuwstraten P. The NINCDS-ADRDA Work Group criteria for the clinical diagnosis of probable

Alzheimer's disease: a clinicopathologic study of 57 ca-ses. Neurology. 1988;38(3):359-364.

29.Dubois B, Feldman HH, Jacova C, Cummings JL, Dekosky ST, Barberger-Gateau P, Delacourte A, Frisoni G, Fox NC, Galasko D, Gauthier S, Hampel H, Jicha GA,

Meguro K, O'Brien J, Pasquier F, Robert P, Rossor M, Salloway S, Sarazin M, de Souza LC, Stern Y, Visser PJ, Scheltens P. Revising the definition of Alzheimer's

disease: a new lexicon. Lancet Neurol. 2010;9(11):1118-1127.

30.J. R. Cockrell and M. F. Folstein. Mini-Mental State Examination (MMSE). Psychopharmacol.Bull. 24 (4):689-692, 1988.

31.Morris JC, Heyman A, Mohs RC, et al. The Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) Part I. Clinical and neuropsychological assessment of

Alzheimer's disease. Neurology 1989;39:1159-1165.

32.Nasreddine ZS, Phillips NA, Bédirian V et al. The Montreal Cognitive Assessment, MoCA: A Brief Screening Tool For Mild Cognitive Impairment. Journal of the

American Geriatrics Society 2005;53:695-699.

33.Yesavage JA, Brink TL, Rose TL, Lum O, Huang V, Adey MB, Leirer VO: Development and validation of a geria-tric depression screening scale: A preliminary report.

Journal of Psychiatric Research 17: 37-49, 1983.

34.Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: a new short ver-sion and screening version. Gerontologist 2001;41:652-

657.

35.Cummings JL, Mega M, Gray K, et al. The Neuropsychiatric Inventory: comprehensive assessment of psychopa-thology in dementia. Neurology 1994; 44:2308-14.

36.Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.”Maryland State Medical Journal 1965;14:56-61.

37.Lawton, M.P., and Brody, E.M. “Assessment of older people: Self-maintaining and instrumental activities of daily living.” Gerontologist 9:179-186, (1969).

38.Thorgrimsen, L,. Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R., and Orrell, M. (2003). Whose Quality of Life Is It Anyway? The Validity and

Reliability of the Quality of Life-Alzheimer’s Disease (QoL-AD) Scale. Alzheimer Dis Assoc Disor., 17(4) :201-208.

39.Scholzel-Dorenbos, C., Krabbe, P., Olde Rikkert, M. (2010). Quality of Life in Dementia Patients and Their Proxies : A Narrative Review of the Concept and

Measurement Scales. In Handbook of Disease Bur-dens and Quality of Life Measures. (Preedy,V. & Watson, R. eds). pp. 3673-3689. New York: Sprin-ger. DOI:

10.1007/978-0-387-78665-0_213

40.Sandelowski M. (1995). Sample size in qualitative research. Res Nurse Health. 18:179-83.

41.Patton, M. Q. (1990). Qualitative Evaluation and Research Methods. (2nd ed.) Newbury Park, CA: Sage Publica-tions.