Mental Health Services for Older People

Strategy for people below the age of 65 years with dementia

Author: Tracey Wilkinson

16th September 2008

Executive summary

Most people perceive dementia as a disease affecting our older population but in fact dementia can affect anyone at any age. Throughout the UK it is estimated that there are over 18,000 people below the age of 65 with dementia.

Whilst symptoms of dementia are similar regardless of age, people below the age of 65 have very different needs requiring a different approach. Many people below the age of 65 with dementia have difficulty accessing age appropriate support and specialist dementia services as current service provision is aimed at the older person with dementia.

To ensure people below the age of 65 with dementia are able to access services which are appropriate to their age, needs and circumstances there must be a degree of differentiation in the overall dementia service for this group of people.

The challenge is to ensure that the service provided does adhere as far as possible to the principles of good practice that are reflected in this paper and that the service model for people with dementia is sophisticated enough to allow the needs of different groups to be met- “one size fits all” will not do.

The proposals within this document provide a good foundation that will enable specialisation and the flexibility within the service to meet the different needs of this group of people; this will require additional funding but where possible this has been kept to a minimum e.g. using existing resources such as memory clinics.

This paper details Nottinghamshire Healthcare NHS Trust's strategy for younger people with dementia but has been shared and amended in light of comments from the PCT’s, both Local Authorities and service users and carers. The strategy has also identified challenges and additional funding requirements for services provided by other organisations, e.g. Nottingham City Adult Services, Housing and Health and Nottinghamshire County Adult Social Care and Health Departments, voluntary services e.g. Alzheimer’s society, East Midlands Crossroads, leisure departments of Local Authorities, as well as identifying the need to develop services which are necessary but could also be provided by other organisations e.g. carer support services.

The key determinant of success will be the extent to which people below the age of 65 with dementia and their carers receive an early diagnosis and the information/support they require. Thus enabling them to play an active part in managing their care needs in environments that are age appropriate, provide choice and which maintain their self esteem and level of functioning to the greatest extent possible.

A full list of proposals is given in appendix A.

2. Introduction

2.1 Background

For the purposes of this paper The World Health Organisation (1992) defines dementia as “a clinical syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is a disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. Impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation."

Dementia can affect anyone at any age. ‘Younger people with dementia’ is a term used for anyone diagnosed with dementia under the age of 65. Other terms that are regularly used are ‘early onset dementia’, ‘young onset dementia’, ‘working age dementia’.

Breakdown of younger people with dementia in the UK population by type of dementia

Alzheimer’s / 34%
Vascular / 18%
Front temporal / 12%
Alcohol-related / 10%
Dementia with Lewy bodies / 7%
Other dementias* / 19%
*Huntington’s disease, dementia in Ms, prion dementia (CJD), dementia in Parkinson’s disease, dementia in Down syndrome and Aids related dementia

2.2 Context

Most people think of dementia as a condition that affects only older people, this poses challenges in recognising, diagnosing and supporting people of younger ages.

The needs of younger people are different and require a range of specialist services to address these different needs. In general younger people with dementia are more likely to;

  • Be in work at the time of diagnosis
  • Have dependent children or family
  • Be more physically fit and active
  • Have heavy financial commitments
  • Have a rarer form of dementia
  • Have different concerns and interests
  • Have aspirations for the future
  • More complex needs

Whilst the majority of those with a young onset presentation suffer from Alzheimer’s disease, a higher proportion, than those over the age of 65 years, suffer from the rarer forms of dementia. People suffering from the rarer forms of dementia tend to present more challenging behaviours and it is important that services are also able to recognise and respond to these.

There are many significant age-related barriers for people below age 65 with dementia when trying to access dementia services. Many services are still age restricted to those above 65 only, whilst other services are not appropriate to age or the needs of this specific group of people.

It is not unusual for people below age 65 with dementia to experience a number of different clinical pathways. These include neurology, adult mental health services, mental health services for older people, acute hospital services, Learning Disability and alcohol and drug services. The impact of this can be an experience of a very fragmented service in which the service user and their carer are “pushed from pillar to post”.

This fragmentation can also increase exposure to risk e.g. placement on an adult ward, delays in diagnosis, an inability to access an age appropriate service and a lengthy period from initial presentation to diagnosis and treatment.

This strategy was felt essential for several reasons;

  • The recognition that younger people with dementia and their families/carers have different needs to older people with dementia
  • To reduce fragmentation and develop clear care pathways and referral processes to age appropriate specialist services
  • The desire to make our services more equitable, accessible, timely and responsive
  • Current service provision is limited due to lack of specialist resources to meet the specialist needs of this client group
  • The need to provide age appropriate evidence based therapeutic treatments e.g. psychological therapies
  • In response to feedback from carers and service users regarding the fragmentation of services and lack of specialist support
  • National and local policy drivers
  • Local and timely access to assessment, diagnosis and treatment
  • Maintaining younger people with dementia in community for longer
  • To improve quality of life and social inclusion
  • Improve support to carers and families

2.3 Drivers for change

The needs of younger people with dementia are increasingly being recognised in national policies related to services for older people with mental health problems that highlight the need for specialist services for this client group.

These include:

  • Everybody’s Business, CSIP 2005
  • Our Health, Our Care, Our Say. Dept. of health 2007
  • High Impact Changes for Mental Health, CSIP & NIMHE 2006
  • National Service Framework Older People, (standard 7) Dept. of health 2001
  • Dementia; supporting people with dementia and their carers in health and social care, NICE December 2006
  • Improving Services and Support for People With Dementia, National audit office 2007

The National Service Framework for older people includes the requirement that ‘the NHS and councils, should review current arrangements in primary care and elsewhere, for supporting younger people with dementia and agree and implement local protocols across primary care and specialist services, including social care‘.

The National Audit Office in discussing services and support for people with dementia highlight that awareness needs to be raised in regards to younger people with dementia and diagnosis (Report by the Controller and Audit General, 2007)

There are many publications recognising the specialist needs of younger people with dementia. The Alzheimer’s society in their Service Development Guide 2005 set out 10 reasons why services should develop specialist services for this client group. This is replicated here to highlight the reasons why a separate strategy for people below the age of 65 with dementia is required.

2.3.1 Everyone, irrespective of their age, should be entitled to quality support and services that meet all their needs. Younger people with dementia are a significant minority with specific needs and circumstances. This makes a strong case for their specific recognition and provision in service planning.

2.3.2 Dementia has an impact on the whole family. However, in families where someone develops dementia under the age of 65, there are specific needs to be addressed. Younger people are more likely to have children and financial commitments dependent on the earnings of the person with dementia and their carer. A carer may be forced to leave work to care for their partner.

2.3.3 There is a higher prevalence of the rarer dementias in younger people. Services need the awareness and experience to work with the different needs presented by the whole range of dementias.

2.3.4 The emotional impact of developing dementia at a young age needs to be addressed. For both the person with dementia and their families the diagnosis has a dramatic effect on future life plans and expectations.

2.3.5 It has proved difficult to provide a service that meets the individual needs of each person with dementia where the group has a diverse range of needs. For example, younger people are likely to be physically stronger, have work-related aspirations and be of a different generation to the majority of people with dementia.

2.3.6 Services should provide an opportunity for mutual support in an environment where people feel at ease. Where services are designed for older people, they often lack such opportunities for younger people who can feel isolated.

2.3.7 Younger people with dementia, their families and friends need different forms of information and emotional support.

2.3.8 The impact on staff providing support to younger people with dementia is frequently underestimated, the different and unfamiliar range of needs, the emotional impact of caring for someone of a similar age and the training implications warrant specific consideration.

2.3.9 The issues facing younger people with dementia and their families are complex and may change quickly. There is a need for ongoing specialist involvement and monitoring.

2.3.10 Studies have shown a significant risk of carer burden where the needs of younger people with dementia have been overlooked and little or no consideration given to service provision or support.

2.4 Prevalence and demand

The prevalence of dementia increases with age, with only approximately 2% occurring below the age of 65 years. Between the ages of 45 to 64 years, dementia affects approximately 85 people per 100,000 head of population (Knapp, 2007). Based on the prevalence rates presented by Knapp (Dementia UK, 2007) it is estimated that in 2008 there will be 247 people with dementia in Nottinghamshire with this figure rising to 260 by 2017. The following table shows the likely distribution by sector:

There are approximately 187 GP practices in the geographical area covered. With the expected numbers of people below 65 with dementia outlined above there would be an average of 1.3 people below 65 with dementia per practice.

The future demand for this service is hard to predict, Knapp (2007) reporting on his prevalence data stated, ‘given the data on the numbers of early onset cases is based on referrals to services, these numbers are likely to be an underestimate. The true figure may be up to three times higher’. The current service provision is fragmented and awareness of this group of people, services available and how to access services is limited. However, there are currently 175 open referrals across the service with the predicted prevalence rates above it would indicate that a percentage of people below the age of 65 are not being seen. Therefore, if we develop clearer referral pathways, provide a specialist service to meet needs and raise awareness of dementia in younger people and services available, we would anticipate an increase in demand.

3. Benefits and outcomes

Through the implementation of this strategy we would expect;

  • The creation of a more seamless service with clear pathways and referral processes
  • Access to early diagnosis and specialist assessment, support and information from the outset for individuals and their carers
  • Access to genetic counseling services
  • To provide age and need appropriate services for people with dementia below the age of 65
  • To provide carers assessments and access to a broad range of carer support services, including support for families with young adults and children. Provide age appropriate support/information where primary carers are young adults
  • To effectively support people to maintain autonomy, control and independence in all aspects of their lives for as long as possible
  • Increased access to age appropriate psychological therapies
  • More people to be supported in their local communities with improved age and need appropriate packages of care
  • It to be recognised that the needs of people below 65 with dementia are different to that of our older population
  • Improved awareness of dementia in people below 65
  • Improved skills among staff from all agencies

4. Service vision

4.1 In February 2005 the Alzheimer’s Society, in their Service Development Guide for Younger People with Dementia published a suggested charter. This is reproduced here both because of its relevance, as a framework of good practice and because it sets out very clearly the range of service that have to be brought together to ensure the provision of a high quality service. It is not intended to suggest that all these services will be provided by the Nottinghamshire Healthcare NHS Trust, but they must form part of the overall vision for this service.

  • All younger people with dementia, their families and carers should have access to comprehensive, specialist services from diagnosis to long term care. Early diagnosis, assessment and referral.
  • GPs should have the relevant skills, training and support to recognise the symptoms of dementia in all age groups and refer people to a specialist consultant who can make a diagnosis and provide ongoing medical supervision. Access to specialist services.
  • Younger people with dementia should have access to a full range of specialist support services, including home, day respite and continuing care, which recognise the different life circumstances and environment of younger people and their carers. Specialist counseling should also be made available.
  • There should be adequate financial support for younger people with dementia and their carers to enable them to meet the extra costs of caring for dementia.
  • Good employment practice: employers and the social security system should adopt good employment practices that recognise dementia as grounds for early retirement and that protect a person’s entitlement to pension rights and other benefits.
  • Education, training and information: there should be appropriate education, training and information for all health and social services professionals to ensure an effective and sensitive response to the needs of people with dementia and their carers.

4.2 Discussions with individuals living with dementia echoed findings in the government white paper ‘Our Health, Our Care, Our Say’,(Dept. of Health 2007) ‘ dementia is a life sentence not a death sentence’, ‘I still have a life to live I just need someone to point me in the right direction’. People want to take responsibility for their health and to be assisted to do that. Services have a role in promoting health and empowering individuals that do not have the same opportunity or capacity to take action to improve their health and well being

4.3 Discussions with carers have emphasized, recognising the expertise they have in the management of the individual they are caring for and listening to their views on management strategies. “Why don’t professionals ever listen to us” is a statement made by a number of carers. Also the importance on delivering what is promised, whether this is a phone call or something more substantial, many carers are very reliant on the mainstream service as their safety net and do become very concerned if they feel that they cannot rely on it.

5. Rationale and Proposed service model

5.1 Referral and eligibility

For many younger people with dementia, obtaining an accurate diagnosis is a difficult and prolonged process. Difficulties accessing specialist services, unclear care pathways, lack of awareness/understanding of working age dementia and/or dementia as a secondary diagnosis are contributing factors.Evidence confirms that more timely access to diagnosis and appropriate services enhances quality of life and wellbeing. Ultimately this process will begin within primary care.

There are many referral routes a GP can access for a younger person with dementia e.g. neurology, adult mental health, and mental health services for older people. In the early 1990’s it was recognised that mental health services for older people were best placed to manage individuals with this disease, given their expertise in diagnosis and management of dementia, and current support services for this client group being located in this service. However, for those that proceed on an alternative referral route, although well able to establish a likely diagnosis, access to further community support services is less likely unless cross referral to mental health services for older people is accessed.

To be eligible people must be below the age of 65 years on referral and have either an established or suspected diagnosis primarily of dementia, which must be progressive in nature. Referrals will be accepted from GPs and hospital specialists but due to the difficulties in identifying cognitive impairments which are non dementia related referrals will be overseen and screened by a senior clinician prior to acceptance.