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Dementia

The term dementia describes a set of symptoms that include:

  • Memory loss.
  • Problems with thinking and reasoning.
  • A decline in skills to carry out activities of daily living.
  • Mood and personality changes.

As well as these symptoms, people may develop behavioural and psychological symptoms, such as:

  • depression;
  • psychosis;
  • aggression;
  • and wandering.

The condition is terminal. Although, people may live with it for up to 12 years after diagnosis (Department of Health, 2009).

It can be caused by a number of conditions or diseases, the most common are:

  • Alzheimer's disease.
  • Vascular dementia caused when the oxygen supply to the brain fails due to vascular disease.
  • Dementia with Lewy bodies.
  • Fronto-temporal dementia (including Pick's disease).

Rarer causes of dementia include:

  • Corticobasal degeneration (CBD).
  • Creutzfeldt-Jakob disease (CJD).
  • HIV-associated neurocognitive disorder (HAND)Huntington's disease.
  • Multiple sclerosis (MS).
  • Niemann-Pick disease type C.
  • Normal pressure hydrocephalus (NPH).
  • Parkinson's disease dementia (PDD).
  • Posterior cortical atrophy (PCA).
  • Progressive supranuclear palsy (PSP).

People with dementia whose symptoms started before they were 65 are often described as 'younger people with dementia' or as having young-onset dementia. The age of 65 is used because it is the age at which people traditionally retired. However, this is an artificial cut-off point without any biological significance. The symptoms of dementia are not determined by a person's age, but younger people often have different needs and require some different support. Young-onset dementia is also more likely to cause problems with movement, walking, co-ordination or balance. This is one reason why younger people with dementia may see a neurologist (a specialist in diseases of the brain and nervous system) rather than – or as well as – a psychiatrist (a specialist in mental health). There are estimated to be at least 42,000 younger people with dementia in the UK: more than 5% of all those with dementia. (Source: Alzheimer's Society)

Dementia is progressive and the gradual loss in ability to function can have a great emotional impact on the person involved and for their family and friends. Carers of people with dementia are often older people and may be frail, with their own health issues to manage. It is important that people get a diagnosis of dementia as early as possible. This gives them time to get the right treatments and find the best sources of support. As well as giving them more time to make decisions about their future.

The local picture

  • In Calderdale, the estimated number of people (over 65) with dementia is 2,376;
  • Locally the dementia diagnosis rate is estimated to be 66%;
  • However, this leaves an estimated 820 people with dementia undiagnosed (including 65 and under); these individuals may benefit from access to support by way of a dementia diagnosis.

Between 2016 and 2017 there were 1,520 emergency admissions to hospital in Calderdale from people with dementia. Most admissions were classified as:

  • Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (22%);
  • Diseases of the respiratory system (16%);
  • Injury, poisoning and certain other consequences of external causes (14%);
  • Diseases of the genitourinary system (12%);
  • Diseases of the circulatory system (7%).

(Public Health England (PHE), 2015).

Inequalities

The Alzheimer’s Society has produced a fact sheet setting out the risk factors for dementia.

The risk factors covered are:

  • Age
  • Gender
  • Ethnicity
  • Genetics
  • Medical conditions and diseases
  • Depression
  • Other conditions
  • Lifestyle factors

Health inequalities have become increasingly important as we learn more about the potential for risk-reduction in dementia. Local authorities and healthcare professionals are more mindful that an individual’s risk of developing dementia can be significantly determined by a number of factors. Addressing health inequalities should feed into the development of initiatives and the tailoring of services and messages to promote dementia risk reduction, as well as dementia care plans. Some of these factors are fixed, such as ethnicity, learning disability, gender and others are caused by social or geographical factors.

For example people from ethnic minority groups tend to be less likely to receive diagnosis of dementia for a number of associated reasons such as:

  • difficulties in accessing health services
  • poorer understanding and awareness of dementia
  • the stigma may be greater in some communities

In Calderdale it is estimated there are 2,584 people aged 65 and over living with dementia and this is expected to rise to 2,763 (7% increase) by 2020. From 70 years of age there is a marked increase in the number of the Calderdale population with dementia. Up to the age of 74 the population numbers for males and females is similar, but from the age of 75 onwards there are a greater number of females compared to males, which follows the national trend. In the UK, 62% of people with dementia are female and 38% are male. This is likely to be down to the fact that women live longer than men and age is the biggest known risk factor for the condition.

As part of the Alzheimer’s Society Dementia Advisor role they are working in partnership with Touchstone to build a network of contacts, including delivering talks about the service and delivering Dementia Friends sessions across the borough, whilst raising awareness of dementia in the local BAME communities’ areas of Calderdale.

Current provision

The first port of call for most people with memory problems is their GP. If the GP feels the individual may have dementia they will usually refer them to the Calderdale memory assessment service. However there are circumstances where referral to the memory assessment service is not always necessary or desirable. In those cases, the GP will use local guidelines to assess the individual and if appropriate make the diagnosis. 

Calderdale memory assessment service is a commissioned service provided by South West Yorkshire Partnership NHS Foundation Trust (SWYPFT) for people registered with a Calderdale GP. The service is accredited by the Royal College of Psychiatrists for the care it provides.   

Referrals are received via a Single Point of Access service that leads to a specialist assessment, diagnosis, and appropriate treatment by the memory team.

Calderdale memory assessment service is committed to providing a high quality, person-centred, robust assessment, and diagnostic service for those people thought to be experiencing memory problems that may be associated with a dementia condition.  People with suspected dementia, or who have a diagnosis of dementia, and their carers receive a service that takes into account the persons unique and changing personal, psychosocial and physical needs.

The various functions carried out by Calderdale memory assessment service are as follows:

  • Assessment - provided in a clinic setting or where a person is restricted to leave their home due to their physical health then a home visit can be arranged
  • Diagnostic - provided in a clinic setting, or in the person’s home where they are unable to attend a clinic appointment, with a Consultant Psychiatrist or an Advanced Nurse Practitioner.
  • Treatment - initiation, titration and stabilisation of memory medication for treatable dementia.
  • Support - where appropriate, liaison with carers and other services for ongoing support in the community for patients suffering from cognitive impairment associated with a dementia.

The service comprises of Registered Mental Health Nurses, Advanced Nurse Practitioners and a Non-medical Prescriber as well as access to Consultant Psychiatrists, Clinical Psychologists, Occupational Therapists, Community Mental Health Team and an Intensive Support team.

Those people living with dementia who reside in 24 hour care and require assessment of their memory and support as to managing challenging behaviours have access to SWYPFT’s Care Home Liaison Team. 

Calderdale memory assessment service works closely with other teams such as the community mental health team, GPs, Social Services, and also third sector services, such as The Alzheimer’s Society.

An initial assessment will be conducted in the memory clinic by one of the memory team and if appropriate a diagnostic appointment will be made with a Consultant Psychiatrist. In less complex cases a person can be assessed by one of the Advanced Nurse Practitioners. If a person is to begin medical treatment for their dementia they will receive ongoing support and monitoring by one of the Memory Nurses. Where there is evidence that the person is concordant with their medical treatment, and there are no significant concerns, a transfer of care will take place back to the care of the person’s GP for ongoing prescriptions. 

The person’s GP is able to review their medical treatment and prescribe a different type of medical treatment for their dementia.  The person can be re-referred for a review of the medical treatment where the GP requires specialist advice.  The person can be referred to older people’s Community Mental Health Team for further mental health assessment and support should the need arise.

The Alzheimer’s Society is leading the local partnership to provide community based support to people living with dementia, their families and carers. Previously the focus of the Alzheimer’s society has been to provide support via two main areas. The first was to provide information and advice, 1:1 support to avoid crisis and support people to remain at home, along with many more activities. Secondly, the Alzheimer’s society has been involved with group work for people living with dementia, carers groups, and a growing number of dementia cafes, a couple run by the Alzheimer’s Society and increasingly others run independently supported by them. The Alzheimer’s Society are working in partnership with South West Yorkshire Partnership Foundation Trust (SWYPFT) Memory services and are part of their pathway to ensure people are referred to them once a diagnosis has been made to ensure people get the right information and support they need at the right time.

Through a recent change in strategy in 2017, the Alzheimer’s Society has reduced its support of group work. These are now either managed directly by the volunteers of the Alzheimer’s Society or through the voluntary sector (Alzheimer’s Society is currently supporting 80+ groups indirectly). Its focus will now be on providing 1:1 support services to deliver group quality outcomes. Further detail can be found on the Alzheimer’s website around the strategy: “A New Deal on Dementia: Alzheimer’s Society’s strategy 2017 – 2022.  The Alzheimer’s Society has provided support to groups to become independent during this transition period.

Current provision is shaped by local need and internal service specifications ensuring a flexible approach.

The overall aims of these locally provided services are to ensure individuals with dementia:

  • Have easy access to care, support and advice following an early diagnosis;
  • Have the right support, at the right time, at the right place to avoid crisis and delay the need for hospital admission or long term care;
  • Have advice and information available to them to increase knowledge of their rights enabling them to make informed choices about the support and services they receive;
  • Have confidence to stay in control of their lives and play a full and active role in society;
  • Know that family members and carers are supported;
  • Are able to influence service design and implementation;
  • Family and carers have support to adjust positively to their changing circumstances and cope with the changes they need to make to their lives to live well with dementia.

Current services Commissioned in Calderdale include:

  • Dementia Adviser Service
  • Dementia Support Service
  • Information Programme for South Asian Families/ BAME Awareness
  • Carer Information and Support Programme
  • Calderdale Dementia Action Alliance (Joint funded until June 2018)

Currently Providing - through Voluntary Income:

  • Singing for the Brain
  • Live Well with Dementia Programme
  • Musical Milestones
  • Calderdale Dementia Action Alliance - (Joint funded until June 2018)
  • Hebden Bridge Dementia Café  
  • Halifax Carer Support Group
  • Living with Dementia Groups

Service promotion:

The Alzheimer’s Society support a large number of events in the local community to raise awareness of local service provision of other statutory and voluntary organisations and to inform members of the public who were not previously aware of the services offered.

Council Managed Service:

Support in Mind Team (SIMs) - this is a specialist home care team to work with people living with dementia.

Bramston Street Extra Care Scheme

Bramston Street located in Brighouse is a new extra care scheme currently under development. It will have a focus on supporting people with dementia, with care and support provided on site 24/7.

The scheme is due to open in Spring 2020.

User views

It is important to collate and monitor feedback from people who have used the service. This is to help shape the future of the service and to build a culture where everyone's views are valued to ensure the service continues to evolve and meet the needs of the people using it.

Regular feedback is collated through various methods:

  • Feedback/comments book made available at every group session
  • Internal service evaluation conducted once a quarter
  • Anonymous questionnaire

Alzheimer’s Society has invested in a new feedback system that can be accessed by members of the public via the website. Feedback can be left anonymously or alternatively there is an option to leave their name. This went live in June 2017.

Below is some feedback and compliments received from ‘The Dementia Advisor and Support Service’ during 2017.

“The service is very good the adviser helps me understand things”

“I have been able to access services and receive information I didn’t know about which has helped me in my caring role”

“Dementia advisor has been extremely helpful. She is very good in listening and understanding. She is very knowledgeable”

“It has been very useful. I know that if there is not enough information for me I can easily ask for it”

Compliments received:

“A person with dementia said ‘It is lovely to spend time with other people and have fun together. This has really boosted my confidence to venture outside my home again. I go to places with my husband again.”

“An invaluable support to me as I have no friends/family supporting me who live locally. Exemplary service by the dementia adviser who has worked tirelessly and cheerfully on my behalf, offering lots of information and encouragement to me, however all staff deliver a very high quality, professional service.”

“Thank you one and all for getting me through the last seven weeks. You have all been so helpful and caring to all of us and made it a lovely experience as well as teaching us about our condition.”

Feedback from Dementia Café’s:

A new volunteer commented that he was impressed how everyone engaged with the songs, music, conversations and activities. He observed that people were empowered to engage in their own way and express themselves freely.

A person living with dementia and his carer said 'Thank you for creating a lovely atmosphere where we really enjoyed everyone's company. It was good to dance and jive as it was our favourite dance when we were younger'

Unmet needs

One of the biggest challenges is around raising public awareness of dementia. National programmes such as Dementia Friends and Dementia Friendly Communities have taken off in Calderdale but more needs to be done to ensure that an understanding of dementia and how people with dementia can be supported to live well with the condition are embedded into everyone’s lives.  

The post to support the development of the Dementia Action Alliance (DAA) in Calderdale has been vacant for since early 2015 but this is currently being addressed and should be recruited to by April 2016. This will support local businesses to become dementia friendly and support people to live independently longer within their local communities, supporting the Councils ambition to become a dementia friendly borough.

Projected future need

Using the Alzheimer society’s prevalence estimates in conjunction with ONS’ population projections - the Institute of Public Care provide estimates of the number of people aged 65 and over predicted to have dementia, by age and gender, projected to 2030. The break down for Calderdale is as follows:

Dementia by gender 2020 2025 2030
Males aged 65-69 predicted to have dementia 84 92 104
Males aged 70-74 predicted to have dementia 167 155 174
Males aged 75-79 predicted to have dementia 184 240 224
Males aged 80-84 predicted to have dementia 235 286 377
Males aged 85-89 predicted to have dementia 200 267 334
Males aged 90 and over predicted to have dementia 167 223 307
Total males aged 65 and over predicted to have dementia 1,037 1,262 1,520
Females aged 65-69 predicted to have dementia 57 65 73
Females aged 70-74 predicted to have dementia 142 127 146
Females aged 75-79 predicted to have dementia 260 345 312
Females aged 80-84 predicted to have dementia 412 466 612
Females aged 85-89 predicted to have dementia 444 511 599
Females aged 90 and over predicted to have dementia 491 583 706
Total females aged 65 and over predicted to have dementia 1,806 2,096 2,449
Total population aged 65 and over predicted to have dementia 2,844 3,358 3,969

(Projecting Older People Population Information System, 2015).

With such a large increase projected it is evident that this will put increased demand on services.

Evidence on care and support for people with dementia identifies the following key areas:

  • Prevention – encouraging people to reduce their risk factors as far as possible.
  • Early identification – raising awareness of the signs and symptoms of dementia and encouraging people to seek help.
  • Timely assessment and diagnosis – enabling people to be keyed into the right care and support as soon as possible.
  • Promoting choice – enabling people to have as much control as possible over their lives.
  • Providing support – enabling people to live well with dementia.
  • Integrated and co-ordinated care – enabling the individual to receive a seamless service.
  • Promoting independence and maintaining function – empowering people to do as much as they can themselves.
  • Interventions – helping people deal with the symptoms and effects of dementia.
  • Support for carers – helping them to care for the person and look after their own health and wellbeing.

Key considerations linked to the known evidence base (what works?)

There have been a number of evidence reviews and best practice documents produced. For example:

NICE Quality Standard (QS1) Dementia: Support in Health and Social Care (2010)

Quality Statements included in this guidance include:

  1. People with dementia receive care from staff appropriately trained in dementia care.
  2. People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
  3. People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area.
  4. People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care, that identifies a named care coordinator and addresses their individual needs.
  5. People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of:
    • advance statements;
    • advance decisions to refuse treatment;
    • Lasting Power of Attorney;
    • Preferred Priorities of Care.

    Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs.

  6. People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan.
  7. People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people's mental health.
  8. People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs.
  9. Carers of people with dementia have access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia.

NICE Quality Standard (QS30) Dementia: Independence and Wellbeing

Quality Statements included in this guidance include:

  1. People worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise.
  2. People with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.
  3. People with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change.
  4. People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.
  5. People with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.
  6. People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.
  7. People with dementia live in housing that meets their specific needs.
  8. People with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services.
  9. People with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
  10. People with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.

References and further information

References

Further Information

For more on older people, see: Further resources.

Become a Dementia Friend: To learn more about what it is like to live with dementia and turn that understanding into action, see: Dementia Friends.

The Council are working towards a joint strategy with key stakeholders including the CCG.

Ongoing work in developing more dementia friendly communities continues.

Authors

  • Commissioning Manager for Adult Mental Health, Calderdale CCG/Calderdale Council.
  • Commissioning Manager for Adult Health and Social Care ,Calderdale MBC.
  • Public Health Intelligence Officer, Calderdale Council.

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