ageing and dementia care in finland - current discussions and challenges

www.helsinki.fi/yliopisto

Ageing and dementia in Finland – current discussions and challenges

Ulla Eloniemi-Sulkava

Adjunct Professor, PhD, RN

10.9.2013 1 [email protected]


Population aged 75+ years in Finland

Age v.2000 v. 2010 v. 2020 v. 2030

v. 2040

75+ 340 409

7 %

411 864

8 %

518 312

10 %

748 144

14 %

826 351

15 %



Life expectancy in Finland

• Male

– 75 yrs: 11 yrs

– 80 yrs: 8 yrs

– 85 yrs: 6 yrs

– 90 yrs: 4 yrs

– 95 yrs: 3 yrs

– 100 yrs: 2 yrs

• Female

– 75 yrs: 13 yrs

– 80 yrs: 11 yrs

– 85 yrs: 7 yrs

– 90 v: 5 yrs

– 95 v: 4 yrs

– 100 v: 2.5 yrs

10.9.2013 [email protected] 3


Dementia in different age groups in Finland (%)

0,26

4,20

10,70

35

0

5

10

15

20

25

30

35

30-64v 65-74v 75-84v 85- v



Prevalence of dementia in a population aged 75+ years and

older (Kuopio 75+ Study)

Prevalence of dementia 22.7%

Alzheimer’s disease (AD) 46.7%

Vascular dementia 23.4%

Dementia with Lewy bodies + AD 21.9%

Other 8.0%



Number of people with dementia in Finland (2013)

• Total 130 000

• Moderate to severe dementia 95 000

• Mild dementia 35 000

• Patients aged 65 years and less 7 000

• Patients aged 80 years and over 60 000

• New cases every year 14 000



Costs of community and long term institutional care in people with dementia

in Finland, million euros (Sulkava 2006)

2005 2010 2015

• Community 893 980 1 105

• Institutional 2 231 2 449 2 760

• All 3 124 3 429 3 865


Year


Dementia in Finland

• Only one half of people with memory disorders are properly diagnosed and accordingly treated

• Three out of four aged people receiving 24-hour care have dementia

• 60 % of people with dementia are in community care, 60 % of them living alone (no informal caregiver)

• There are increased needs for services with aging population, therefore it is needed – to promote brain health – to prevent memory disorders – to detect memory problems as early as possible – to have an effective and seamless clinical pathway for

treatment, rehabilitation and support


www.helsinki.fi/yliopisto 10.9.2013 [email protected] 9

Even a minor change in the efficacy of treatment or care can significantly decrease costs and improve quality of life of people with dementia.


National Memory Programme 2012–2020.

Creating a "memory-friendly" Finland

Four pilars:

1. Promoting brain health

2. Fostering a more open attitude towards brain health, treatment of dementia disease and rehabilitation

3. Ensuring a good quality of life for people with dementia and their families through timely support, treatment, rehabilitation and services

4. Increasing research and education

http://www.stm.fi/c/document_library/get_file?folderId=6511574&name=DLFE-26234.pdf

10.9.2013

[email protected] 10







There is a friction

between the service system and

caregiving families


We studied dementia caregiving families

(Raivio et al 2007)

• In what terms spouse caregivers do their every day work?

• How do spouse caregivers adjust to their situation?

• What are the subjective needs of these spouse caregivers from our service system?

• How our services meet the needs of dementia caregiving families?



• Cross-sectional postal survey to spouse caregivers of people with Alzheimer’s disease (AD) in Finland

• A random sample of Alzheimer drug users’ register (N= 1989)

Methods

HELSINKI

TAMPERE

LAPLAND

NORTH CARELIA

MIDDLE FINLAND



Demographics

• 75% returned the questionnaire

• 1214 spouses acknowledged themselves as the main caregiver of the spouse with AD

• 63% of the caregivers were women

• Mean age of caregivers: 78 years

• Mean age of spouses with AD: 80 years

• Mean years in marriage: 52 years

• A third of caregivers had a poor subjective health



Behavioral and psychological symptoms of spouses with dementia (n=1214)

0

10

20

30

40

50

60

70

80

Need for

constant

supervision

Depressed Agitated Cooperation

difficulties

Hallucinations Incontinence



Physical impairments of spouses with dementia (n=1214)

0

10

20

30

40

50

60

70

80

Poor

functioning

Needs

spouse's aid

when walking

Rigidity Dizziness Muscle

weakness

Pain



Adjustment to caregiving situation

• Caregiving limits social life 63.5%

• Well or quite well adapted to the spouse’s Alzheimer’s disease 92.2%

• Satisfied with their marriage 63%



Psychological well-being of spouses (n=1214)

0

10

20

30

40

50

60

70

80

90

100

Satisfied with life Feeling needed Zest for life Constantly

depressed

Lonely



Official services most often offered for AD caregiving families

• Financial support to caregiver 36% (”caregiving salary”)

• Various aids and devices (e.g. walking aid) 33%

• Physiotherapy 32%, of which 86% was rehabilitation to II world war veterans based on law

• A respite care in an institutional setting 31%



Services wished and received by spouse caregivers

0

10

20

30

40

50

60

70

Physiotherapy Society's financial

support

House cleaning Home respite

Wished services

Received services



Satisfaction to the services in the families

• Only 39% of the families were satisfied with the services they received.

• Only 29% found it was easy to get information about available services.

• Only 31% felt they could have any influence on what services they received.



Key messages

• Spouse caregivers of the spouses with AD were old and many in poor health.

• People with AD have high rate of behavioral and psychological symptoms and need for continuous help.

• Caregivers have adjusted well to their life situation, often satisfied with their marriage and have quite good psychological well-being.

• Services meet poorly needs of these families.



In complexity of the service system a coordinator is needed to work in cooperation with people with dementia and their families

FAMILY

PRIMARY -

CARE -

PHYSICIAN

SPECIALIST -

DOCTOR

DEMENTIA -

NURSE

HOME CARE -

NURSE -

NUTRITIONIST -

MEALS ON -

WHEALS

FOOT -

CARE

DENTIST -

PHARMACY

PHARMACIST

TAXI -

SERVICES

INVALID PARKING

-

(POLIS)

DEVICES -

OCCUPATIONAL THERAPIST

-

- DIPERS

II WORLD WAR -

VETERANS’ -

REHABILITATION -

SERVICES

II World war

VETARNANS’ -

SERVICES

Third sector services

various private services

- domestic help

- caregiver groups

- Alzheimer clubs

- doctors, etc

- l

OFFICIAL

ECONOMICAL

CAREGIVER SUPPORT

SOCIAL -

CARE

WORKER - RESPITE

- CARE -

VARIOUS

DAY Ä

CARE

DEMENTIA -

COUNCELER

PHYSIO -

TERAPY -

SOCIAL SERVICE OFFICE: - l SUBSTITUTIONS FOR DRUGS, LIVING ARRANGEMENTS, REHABILITATION,

-

-

-

-

TAX OFFICERS -

NURSE -

SOCIETAL: LEGAL ISSUES

BANK

- legal issues

- lawyers

DOMESTIC SERVICES -

- SHOPPING CLEANING

-

-

NURSING HOMES

SPEECH THERAPY



Two randomized controlled trials with the main element of a dementia care

coordinator


Kuopio Dementia

Study

(Eloniemi-Sulkava et al

2001)

Family care as

collaboration

(Eloniemi-Sulkava et al

2009)


Aika, kuukautta

0 2 4 6 8 10 12 14 16 18 20 22 24

Laitostu

min

en, %

0

5

10

15

20

25

30

35

40

45

50

Kontrolliryhmä

Hoitoryhmä

During the follow-up

time p = 0.27

Time in community care (Eloniemi-Sulkava et al 2009, in line with the survival curve in 2001)

At 1.6 yr, 11% of

people with dementia

in intervention group

vs 24% of those in

control group were

in permanent

institutional care

(p=0.027) 10.9.2013 25 [email protected]


Cost of services (Eloniemi-Sulkava et al 2009)

• Mean cost of municipal social and health care services/ couple/ year: in intervention group 15 568 € vs control group 23 553 €

• Mean savings/couple/ year 7 985 euros in municipal social and health care services (p=0.03)

• Mean cost of intervention/ couple/ year was

2 923 €



The panel of experts:

Finnish recommendations for best practices in the treatment of progressive memory disorders (Suhonen J, Alhainen K, Eloniemi-Sulkava U et al, 2008)


Main points of the recommendation

• Prevention of dementia • Early diagnoses • Good medical care including AT medication • Diagnostics, effective treatment, family support

and guidance by memory clinics • Comprehensive assessment and care planning • Continuous chain of care and services throughout

disease process • Support of community care is arranged by

dementia care coordinator



Guidelines for medical treatment

• Current Care Guideline for Memory Disorders (The Finnish Medical Society Duodecim

2010)



Guidelines for the competences of multiprofessional team (Eloniemi-Sulkava et al 2010)


Increasing interests in: • a person with dementia as a human being • interaction and communication issues •Environmental issues • quality of life and wellbeing issues • effective psychosocial interventions


• Disease-orientated approach: – behavioural and psychological symptoms of dementia

(BPSD) – behavioural problems – neuropsychiatric symptoms

• Nurse-orientated approach: – challenging behaviour

• Person-orientated approach: – Unmet needs behaviour – Need-Driven Dementia-Compromised Behaviours


Behavioral symptoms or needs of a person with memory disorder?


Recent Finnish RCT’s with positive results

• Supporting staff towards person-centeredness, and to identify and meet unmet needs of people with dementia decreased challenging behaviours and increased quality of life in people living in long term care settings. (Eloniemi-Sulkava and Savikko 2011)

• Tailored nutrition guidance and care has beneficial effects on nutrition and health related quality of life in home-dwelling people with AD. (Suominen et al 2013)

• An intensive and long-term exercise program had beneficial effects on the physical functioning of people with AD without increasing the total costs of health and social services or causing any significant adverse effects. (Pitkälä et al 2013)



For past 20 years : • We have gained much knowledge. • We have conducted high level RTC’s. •We have national recommendations and guidelines from diagnoses to death. •We even have guidelines to professional competences.


How to implement evidence based practices in real life?

1. High quality multidisciplinary reseach team

2. Funding

We need to study


Lights of the day (Päivänvaloja, artist Nanna Susi)


ageing and dementia care in finland - current discussions and challenges

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