Dementia

The term dementia describes a set of symptoms which include: memory loss; problems with thinking and reasoning; a decline in skills to carry out activities of daily living; mood and personality changes. In addition to these symptoms, people may develop behavioural and psychological symptoms such as: depression; psychosis; aggression and wandering. The condition is terminal, but people may live with it for up to 12 years following diagnosis (Department of Health (DoH), 2009).

Dementia can be caused by a number of conditions or diseases, the most common being:

  • 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).

Dementia presents a huge challenge to society, both now and increasingly in the future. There are approximately 850,000 people with dementia in the UK and this number is estimated to reach 1 million by 2025. The cost to the economy is currently around £26bn per year (Alzheimer’s Society, 2015).

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 allows 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 2,299;
  • Locally the dementia diagnosis rate is estimated to be 73%;
  • However, this leaves an estimated 719 people with dementia undiagnosed (including under 65s);
  • These individuals may benefit from access to support by way of a dementia diagnosis.

(NHS England, 2015)

Between 2013 and 2014 there were 1,197 emergency admissions to hospital in Calderdale from people with dementia (773 unique individuals). 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)

Current provision

In 2011 a range of services were set up in Calderdale as pilots with to address some of the issues highlighted in the Department of Health’s strategy – ‘Living Well With Dementia: A National Dementia Strategy’ (DoH, 2013). In 2014/15 these services were reviewed and a new contract was awarded to the Alzheimer’s Society to deliver the current service provision. Current provision is shaped by local need and internal service specifications ensuring a flexible approach.

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

  • To 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;
  • … their 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 Café’s;
  • Carer Support Groups;
  • Living with Dementia Groups;
  • Dementia Adviser Service;
  • Dementia Support Service - offering 1:1 support to families to develop coping strategies and avoid crisis;
  • Black and minority ethnic support in partnership with Touchstone, Leeds;
  • The Alzheimer’s Society are currently piloting a ‘Young at Heart’ group, which they anticipate will lead to a number of several closed groups led by people affected by dementia to enable people to continue participating in the activities they have always done and to eliminate social isolation. So far there is one group running independently with no support from the Peer Support group facilitator;
  • Work with GP surgeries to support early diagnosis;
  • Direct links with the Memory Service to ensure people with a diagnosis of dementia are offered appropriate advice and information.

Currently Providing through Voluntary Income:

  • Singing for the Brain

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

User views

What people said about services run by Alzheimer’s Society during the initial service review in 2015:

  • “I am living with dementia and coming to the groups and helping other people is brilliant. I like to share my ideas and I am a Dementia Friend & Champion!”;
  • “The groups are really helpful, once you know they are there”;
  • “It has been a lifeline finding out about the carers groups”;
  • “You find out so much information from other people that are in the same situation as you”;
  • “I started out coming to the groups with my dad but now I am also a volunteer, a Dementia Friend & Champion!”

Other feedback

One of the objectives of the new service is to involve people who use the service in shaping service delivery.  To ensure this is an ongoing component - regular feedback is needed. This is done through feedback/comments book made available at every session. Internal service evaluation is conducted once per quarter. This sometimes involves using an OMBEA audience response system during group sessions (ask the audience) and also small group discussion or anonymous questionnaire. Ongoing feedback and building a culture where everyone's views are valued ensures the service continues to evolve and meet the needs of the people using it.

One suggestion was to change the carers closed groups to an open group. In response to this the Dementia Support Worker visited another Alzheimer’s Society carers group to see how they work differently in different areas with a view to changing the carers groups to open groups as requested. This was discussed further with carers and a date to open the groups has been set.

Other comments made by group members are:

  • for dark chocolate biscuits;
  • for fruit/vegetable snacks;
  • Group request for curling;
  • Group request for Laughter Yoga.

Although these changes may appear to be minor, implementing them has have a great impact on people, helping them feel completely involved and part of the group. All requests were implemented.

Other requests have been to have the groups more often but this is not possible at the moment within the workers hours although staff are looking to work alongside other organisations to open more groups up and offer specialist support to people with dementia, for example, supporting some of the generic carers groups and also supporting dementia cafes to be set up and run independently in Todmorden, Walsden and at The Shay.

Unmet needs

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

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

More information on older people can be found in the Further resources .

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

Always open first panel: 

Authors

Angela Gardner, Commissioning Manager, Adults, Health and Social Care, Calderdale Council;
John Lomas, Information & Evaluation Officer, Public Health, Calderdale Council;
Corinne McDonald, Project Manager, Calderdale Clinical Commissioning Group.

December 2015.