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ADI conference 29.3.2011

Finnish Rehabilitation System – The Challenges for People with Early-Onset Dementia and their Relatives. ADI conference 29.3.2011. Heidi Härmä, Alzheimer Society of Finland. Conflict of Interest Disclosure Heidi Härmä, Bachelor of Social Sciences. Has no real or apparent

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ADI conference 29.3.2011

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  1. Finnish Rehabilitation System –The Challenges for People with Early-Onset Dementiaand their Relatives ADI conference 29.3.2011 Heidi Härmä, Alzheimer Society of Finland

  2. Conflict of Interest DisclosureHeidi Härmä, Bachelor of Social Sciences Has no real or apparent conflicts of interest to report.

  3. Alzheimer Society of Finland • Established in 1988 to provide help and assistance for people with dementia and their caregivers • A non-profit organization which is mainly funded by the Finnish Slot Machine Association • Central office, 3 local offices, nursing home Leenankoti and 42 member associations with 10’000 members altogether • A project for people with early-onset dementia and their caregivers (2002-2011)

  4. People with early-onset dementia in Finland • Over 120’000 persons with dementia, of which 7’000-10’000 under 65 years of age (CurrentCare2010) • Services are mainly provided through elderly and disability services • The right for rehabilitation should be equal despite of age, diagnosis and place of residence • Things that work in Finland: diagnosis (neurology) and medication • The rehabilitation services for this group seem inadequate

  5. VETERAN REHABILITATION • Out patient • Institutions • DOMESTIC AID / HOME NURSING • Cleaning, washing, shopping, alarm services • Follow-up of medication NUTRITIONAL ADVICE - Nutritionist SELF-CARE SERVICES - Dipers DENTAL CARE VETERAN OFFICE FOOT CARE COMMUNITY’S DEMENTIA NURSE HEALTH CARE NURSES MEALS ON WHEELS GENERAL PRACTIONER PHYSIO-THERAPY • DEVICES • Modification of residences • Device unit / occupational therapy FAMILY CHEMIST - dispenser TRANSPORT SERVICE • SERVICES OF ORGANIZATIONS AND PRIVATE SECTOR • Home aid • ”Senior Stop” • Societies of caregivers • Psychotherapy • Doctors SPECIALIST DOCTOR SPECIAL PARKING FOR INVALIDS - Police SOCIAL WORKER OF THE SERVICES FOR THE ELDERLY RESPITE CARE INSTITUTIONS DAY ACTIVITY • BANKS • Powers of attorney • Lawyers FINANCIAL SUPPORT FOR CAREGIVERS • SOCIAL INSURANCE INSTITUTION • - Compensation for drugs, care, housing • Adaptation training • Rehabilitation TAX AUTHORITIES – Discount for household works and decreased ability to pay taxes Eloniemi-Sulkava ym. 2006 DEMENTIA NURSES OF OUT PATIENT CLINIC ADMINISTRATIVE COUNCIL - Guardianship

  6. The studies (3) • The Experiences of People with Early-Onset Dementia and Their Relatives • Qualitative study (2010): • The aim of the study was to find out • how people with early-onset dementia and their relatives experienced the existing rehabilitation and support services and • were there needs that no services matched • Theme interview, N=13 • Quantitative study (2011): • The aim of the study was to find out • what rehabilitation and support services were being used and • how those services were experienced • Questionnaire, N=87

  7. Memory barometer 2010 • The aim of the study was to find out • about the services for persons with dementia and their caregivers • The availability and quality of the services • The knowledge and expertise of the personnel • The municipal strategies and programs that guide the services and the service development • A quantitive questionnaire with open questions aimed for municipal policymakers of social and health services • The response rate equals 43 % of the population of Finland • Made by the Alzheimer Society of Finland once every five years (previously dementia barometer)

  8. Results • Wishes of the people with early-onset dementia and their caregivers • Rehabilitation that meets subjective needs, maintains (physical) abilities to function and supports meaningful living • ”It’s been three years since the diagnosis and there’s no rehabilitation available. There’s something’s wrong with this.” (spouse) • ”It’s a huge change to retire unexpectedly when you have been in a high position and suddenly have to stay home. My husband said he feels like he’s nothing anymore, important to no one. The change from the active worker to a person in disability pension is a huge threshold. There should be some place to go for a coffee and talk to people. The wish to be a part of some community is very powerful.” (spouse)

  9. Services that are continual • Services for the whole family, including the children • “They told me I could have brought a dog to the rehabilitation course, but not our 13-year-old son.” (spouse) • Challenges in present Finnish rehabilitation service system for early-onset dementia • Early-onset dementia is not part of policy making • ”You always talk about elderly when you talk about Alzheimer’s. Always.” (spouse) • The professionals do not have the knowledge and understanding needed to meet the needs of this group

  10. Interaction with persons with dementia Recognition of dementia symptoms Supporting the caregivers Medical treatment The prevention of dementia Psychological support Meeting and treating psychological and behavioral symptoms Rehabilitation Meeting the needs of people with early-onset dementia POORLY WELL

  11. Conclusions • Rehabilitation should start right after the diagnosis • People need support for continuing to work and retiring • The expertise of the nursing staff needs strengthening • It is principal to consider the age factor when organizing services for this group • ”We went to a peer support group with my husband. Others were in their 80s, us in our 50s. They were just pitying me: oh you poor child, wonder how long you still have to suffer. I think it was more of a pain than a gain then.” (spouse) • Humane and cost-effective ways should be considered • Municipal services should be responsible for the well-being and rehabilitation of these people

  12. Going on and coming • Recommendation of rehabilitation for thepeople with early-onset dementia and theircaregivers • Book: The memory and memory relateddiseases of working-aged people (WSOYpro2010) • MuistinTila • For example calculations for the incidence ofthe people with early-onset dementia in Finland • A follow-up study about the first year after diagnosis • Main object is to find out what support and services the people with dementia and their relatives get • For example, medication, proper diagnosis in time, rehabilitation plan and services, psycho-social support • Not a specific age group

  13. Luotsikatu 4 E, 00160 Helsinki, Finland p. +358 – 9 – 6226 200 www.muistiliitto.fi projectplanner, Bachelor of Social StudiesHeidi Härmä p. +358 – 9 – 6226 2053 heidi.harma@muistiliitto.fi

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