There are around 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. 225,000 will develop dementia this year, that's one every three minutes. 1 in 6 people over the age of 80 have dementia (NHS UK 2017)

In Dorset the figure is around 13,400 people of all ages living with dementia (Dorset CCG, 2019)

There are different types of dementia:

Alzheimer’s Dementia is the commonest type, seen in 60-80% of all cases

Vascular Dementia is seen in around 20% of all cases

(Alzheimer’s and Vascular Dementia together are often referred to as mixed dementia and are more common than previously thought)

Lewy Body Dementia (LBD) accounts for up to 15%

Fronto Temporal Lobe Dementia (FTD) accounts for around 5% of all dementia

Dementia in people with Down's Syndrome - Alzheimer's dementia has a high prevalence in people with this chromosomal abnormality and occurs in around 30% of people with Down's Syndrome during their 50s and around 50% in their 60s Alzheimer's Society - Dementia in People with Down's Syndrome

Limbic-predominant age-related TDP-43 encephalopathy (LATE) - an international team of researchers has proposed a name for a type of brain disease that causes dementia symptoms and has recently been in the news: Limbic-predominant Age-related TDP-43 Encephalopathy, or LATE.

The name brings together previously identified conditions linked to a protein that damages regions of the brain. The damage causes memory and thinking problems, similar to those seen in Alzheimer's disease and other types of dementia.

Alzheimer's disease is thought to be caused by an accumulation of 2 types of protein, tau and amyloid beta, in the brain.

LATE is thought to be caused by another protein, TDP-43, which is usually present in the centre of nerve cells, but may change form and spread into the body of nerve cells as people get older.

It's thought to affect around 20% of adults over 80. Some people may have both types of disease.

At present LATE can only be diagnosed by examining brain tissues after death. Researchers say it may explain why some recent trials of treatments for Alzheimer's disease have been unsuccessful.

They say treatments may have effectively treated the proteins that cause damage in Alzheimer's disease, but LATE may have continued, masking any improvements to Alzheimer's symptoms.

They're calling for research to find markers that allow LATE to be diagnosed before death so clinical studies on its causes and potential treatments can begin.

But understanding of this condition is still in the early stages and as experts say, it's not something that could be currently diagnosed in the clinic.

More information about the types of dementia, treatment, support and diagnosis in the UK can be accessed at https://www.nhs.uk/conditions/dementia/about/

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NICE Information - Dementia

NICE recommendations: Delaying or preventing dementia in mid-life

Alzheimer's Society Report 2014

Alzheimer's Society Video discussing treatments

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Treatments that don't involve medicines

Medicines for dementia symptoms are important, but are only one part of the care for a person with dementia. Other treatments, activities and support – for the carer, too – are just as important in helping people to live well with dementia.

Cognitive stimulation therapy

Cognitive stimulation therapy (CST) involves taking part in group activities and exercises designed to improve:

• memory
• problem-solving skills
• language ability

Evidence suggests that CST benefits people with mild to moderate dementia.

Cognitive rehabilitation

This technique involves working with a trained professional, such as an occupational therapist, and a relative or friend to achieve a personal goal, such as learning to use a mobile phone or other everyday tasks.

Cognitive rehabilitation works by getting you to use the parts of your brain that are working to help the parts that are not. In the early stages of dementia, it can help you cope better with the condition.

Reminiscence and life story work

Reminiscence work involves talking about things and events from your past. It usually involves using props such as photos, favourite possessions or music.

Life story work involves a compilation of photos, notes and keepsakes from your childhood to the present day. It can be either a physical book or a digital version.

These approaches are sometimes combined. Evidence shows that they can improve mood and wellbeing. They also help you and those around you to focus on your skills and achievements rather than on your dementia.

You'll find more details about these treatments in the Alzheimer's Society's dementia guide.

May 2019 https://www.nhs.uk/conditions/dementia/treatment/

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Behavioural and Psychological Symptoms of Dementia (BPSD)

Francis Report Executive Summary

• Memory Assessment Services
• In-Reach Team
• Older Persons Community Mental Health Teams
• Learning Disability Community Teams
• Haymoor Day Hospital (East)
• Melcombe Day Hospital (West)
• Intermediate Care Services for Dementia
• In-Patient Wards at Alderney Hospital - Herm and St Brelades
• Speech and Language Therapy
• Dietitians
• Admiral Nurse for Purbeck
• Carer's Groups

The Memory Assessment Service (MAS) is a multi-professional assessment, diagnostic and treatment service for people in Dorset run by DHUFT.

MAS provide formal memory assessments and can be contacted for specific advice and guidance on referrals.

MAS expects that physical checks are completed before referral to rule out any reversible causes of memory problems.

People are seen in a variety of settings including clinics in hospital, GP surgeries or at home if there is a reason they are unable to travel to clinic.

The team comprises Registered Nurses, an Occupational Therapist and Consultant Psychiatrists. The team will complete a thorough assessment of cognition and effects on functioning. If necessary they will refer for a CT Brain Scan and in the cases of younger people or more complex presentations they will request an MRI Scan or neuropsychological assessment for a more in-depth assessment. At all points the GP will receive copies of letters.

The clinical staff are skilled at assessment and there will be a clear plan of care given to the patient in letter form.

The team will refer onto other agencies and liaise with carers/supporters of the patient as needed.

If the individual is prescribed medication we will monitor this and feedback to the GP after three months.

We will also liaise with the Memory Support and Advisory Service (MSAS) to request that the patient is followed up by one of their Memory Advisors.

MAS in the East of Dorset can be contacted on 01202 305746.

MAS in the West of Dorset can be contacted on 01305 762506 for Weymouth and Bridport - 01305 214500 for Dorchester - 01258 394059 for North Dorset

NB: The Memory Support and Advisory Service, known as MSAS is not a Trust service. It is a CCG commissioned service which GPs can refer to directly, who will refer in to the Trust's Memory Assessment Services for a formal diagnosis. They are there to ensure that people in the community have support for while they are waiting for a diagnosis and treatment for themselves or a loved one. They are run by the Alzheimer's Society - more information can be found HERE

What do they do?

The team is an innovative service to support people with organic and/or functional mental illness in care homes, day centres and community hospitals in. The team comprises specialist mental health nurses supported by a team administrator and team manager. They also offer student nursing placements for Bournemouth University RMNs in training.

The service provides an alternative to hospital admission through clinical nursing support and assessment of clients who are not being treated within secondary mental health services. They aim to see residents within two working days of a referral. A nurse will complete the assessment of any resident’s mental health needs, behaviour that challenges and help with care planning for more effective treatment in the home and offer feedback and assistance with treatment planning and approach to manage the care of the person.

A key part of their role is to provide training and education to Nursing/Residential homes as well as GP surgeries, day centres, care agencies and community hospitals.

Hands on Care:

If the assessment requires practical support with personal care, to role model and help develop appropriate safe care-plans the team are able to facilitate this. They also offer more general support and advice around areas such as delirium, medication reviews, care planning, person-centred care, legal aspects of care, getting a person assessed for a formal diagnosis of dementia, signposting to other services and referral direct to secondary mental health services if needed.

Core Hours:

Monday to Friday 9am to 5pm; however, they can work flexibly earlier or later in the day to especially around essential care and training.

Referral Criteria

Residents do not have to have a pre-existing diagnosis of dementia or other mental illness/disorder to be referred to In-Reach. They also do not have to have had previous contact with mental health services.

Checklist, before a referral is made:

1. Please check to make sure the person is not open to any Community Mental Health Team (CMHT). If the person is open to the CMHT, In-Reach will liaise with the CMHT to see if In-Reach can work jointly with the CMHT.

2. Please rule out delirium.To think of a way to rule out delirium think ‘PINCH ME’. Does the person have: any issues with any of the following that might be causing the change in their behaviour?

Pain

INfection

Constipation

Hydration

Medication

Environment

Training

FREE training sessions for residential homes/community hospitals and their staff which can be offered 1:1, in small or larger groups if required.

Training topics include:

• Dementia Awareness
• Person-Centred Care
• Behaviours that Challenge
• Meaningful Activities
• Acute Confusional State (Delirium)
• Record Keeping
• Communication
• Mental Capacity Act
• Deprivation of Liberty Safeguards (DoLS)
• Medication in the Older Adult
• Falls Management and Prevention
• Intimacy in Relationships

Contact Details:

In-Reach Team

Alderney Community Hospital

Ringwood Road

Parkstone

Poole

Email: dhc.inreach.referrals@nhs.net

Community Mental health Teams for Older People (CMHT-OP) help people who have a mental health problem and live in their own home or a care home. The service provided by CMHT-OPs will focus on patients with a significant mental disorder who are aged 65 years and over or those under 65 years who have complex memory problems.

Each team is responsible for a designated geographical area and accepts referrals from specified GP practices in their area.

The teams comprise of staff from various professional groups. They have the knowledge and skills to assess and treat people with serious mental health problems. Support is also provided for their family and / or carers.

Who is the service for?

The team provides care for people who have one of the following types of illness:

- dementia or memory loss

- clinical depression

- extreme stress or anxiety

- obsessions or phobias (fearful states)

- mental health problems which seriously affect daily living such as psychosis or bi-polar disorders

For those individuals whose level of mental health need does not fall within the scope of the eligibility criteria the specialist mental health service may provide advice and/or signposting for alternative community services either directly to the individual or to the referrer.

We will always look for flexibility and consequent negation and undertake to give the opportunity to referrers to discuss rejected referrals or to discuss individual cases prior to a referral being made.

Who are the team?

The team may include:

Community Mental Health Nurses

Occupational Therapists (OTs)

OT Assistants

Consultant Psychiatrist and Staff Grade Psychiatrist

Support Time Recovery workers

Clerical Support Staff

The team work closely with social workers, community care officers and other relevant agencies.

Getting in touch

Patients can contact the team themselves or they can be referred by a professional such as their GP, social worker, or district nurse. Relatives or carers may also contact the service directly

The patient’s GP will always be contacted about their referral to this service.

What happens next?

When the team receives a referral, the person is offered an appointment for an assessment. This normally takes place in the patient’s home or as an outpatient appointment, but an alternative venue can be arranged if appropriate.

The assessment will be wide ranging, covering the patient’s mental and physical health and also their social situation, including the needs of their family / carer where applicable. From this, a joint decision will be made identifying personal needs and a treatment plan will be agreed.

What services do the team offer?

The service is based on individually assessed needs. This could include:

• information, resources and advice to support patients at home and their carers / family
• assessment of independence and safety
• a range of individual and group therapies to address the patient’s needs
• activities to promote social and practical skills for daily living
• advice about medication
• advice on support services for patients and carers including home support, day care, sitting service.
• Some CMHT-OPs have access to a day hospital.
• referral to other agencies
• support to residential / nursing homes
• carer information and carer support groups.
• Support with benefit applications and Continuing Healthcare applications.

Referral Management

Each CMHT-OP will have practitioners available between 9.00am – 5.00pm Monday to Friday to respond to emergencies.

On receipt all referrals will be recorded on the IESUR by administration staff on the day of arrival prior to being forwarded to duty worker for review.

The duty worker will review each referral and complete the Referral screen form in the IESUR. Referrals will be categorised as; Emergency, Urgent, Non-urgent or pending.

Emergency Referrals To be seen on the day the referral was accepted for treatment. Clinical priorities are defined below

Emergency referrals are appropriate for acutely suicidal or vulnerable people and those whose mental health problems may place others at risk.

The referral request will be made by telephone or face to face with a fax follow up adding additional information as necessary.

If a doctor is referring and wishes to speak with a consultant this can always be done upon request.

Urgent referrals to be seen within 5 working days.

Urgent referrals are appropriate for people with significant and distressing mental health problems who have suicidal thoughts or thoughts of harming others but whose clinical presentation is not such that requires an immediate same day assessment.

The referral can be made by fax, telephone, letter or face to face.

If a doctor is referring and wishes to speak with a consultant this can always be done upon request.

Non urgent or routine referrals to be seen within 28 days.

Referrals will be made by fax, letter, telephone call or face to face.

Crisis (Mental Health Support) and Home Treatment Teams - county-wide services

The Crisis Home Treatment Teams are secondary mental health services that offer assessment for short term intensive treatment to service users open to Dorset Healthcare Mental Health Services. The team work with service users suffering from acute mental illness or disorder who require intensive home treatment as an alternative to hospital admission.

Access to this service is through the relevant Community Mental Health Team or in an emergency out of hours via the Out of Hours GP.

Dementia support:

Out of Hours, they will offer telephone support and advice to people with acute issues related to dementia.

The Learning Disability services work in partnership with local councils to provide health and social care support for people in Dorset with learning disabilities.

Our Community Learning Disability Teams offer practical help with physical and mental health problems, relationships, behaviours and communication, as well as advice on issues such as finance, employment and housing.

The incidence of dementia is high in people with Down's Syndrome and it is not uncommon for signs and symptoms of dementia to appear in the person's 40s or 50s (up to 30%). The Trust's Learning Disability services provide care across all age ranges and are working towards developing more specialism in this area.

The Learning Disability teams employ specialist nurses, psychologists, psychiatrists, physiotherapists, occupational therapists, social workers and speech and language therapists. They work closely with families, carers and GPs to ensure the care and support provided is tailored to the needs of the individual.

Information about DHUFT's LD services - the Trust has services located all over Dorset and on this page you can find some easy to read leaflets about Learning Disabilities.

Haymoor Day Hospital consists of a small nursing team and provides Monday to Friday support and treatment for service users in East Dorset with a diagnosis of dementia who already access DHUFT services. The team there assist the CMHT and families/carers to access appropriate local authority community resources such as Day Centres. The service also offers support to carers and ensure they are able to access a carer’s assessment if required.

Functions

• To work across organic inpatient and community services to provide the most appropriate therapeutic day care service for patients with a diagnosis of dementia presenting with particularly challenging behaviours;
• To provide educational supportive interventions to families and carers;
• To provide skilled and meaningful occupation and longer term assessment in a therapeutic environment.

Aims

• To support family members and carers to maintain their caring role;
• To provide quality, appropriate day hospital care and treatment for service users with dementia in the community;
• To support CMHT-OP’s in East Dorset and ICSD (E) by offering day care to reduce the demand for mental health inpatient beds;
• To manage the increasingly ageing population with co-morbid dementia and physical health problems in the least restrictive settings;
• To offer an inclusive and therapeutic activity environment for people with a more advanced level of dementia.

Access to the Day Hospital

Haymoor provides secondary day care mental health intervention and treatment.The service can only be accessed directly through other secondary care mental health services.

The following teams can refer directly:

• Bournemouth, Poole and South and East Dorset CMHT-OPs
• ICSDE
• Organic OPMHS Wards
• In-Reach

To contact Haymoor Day Hospital to discuss a referral please ring 01202 305023 or Email: dhc.haymoor.referrals@nhs.net

Melcombe Day Hospital is situated at Weymouth Community Hospital, Melcombe Avenue, Weymouth, Dorset DT4 7TB. It caters for older adults with mental health conditions under the care of CMHT-OPs in West Dorset.

Referral is via the Weymouth & Portland Community Mental Health Team on the same site - 01305 762508

What can you expect?

• An award-winning service for people with older people with dementia and functional conditions
• A service for assessment, therapy and treatment in a positively enhanced environment including a garden.
• Person-centred care, promotion of independence/normality/health & well-being is key
• Alternative non-pharmaceutical approaches to addressing behaviours and increased mental stimulation with structured activity sessions.
• Ten places each day from Monday to Thursday
• Open from 08.30 to 16.30 but people usually attend between 09:00 and15:00

Intermediate Care Service for Dementia (East and West)

The ICSDs are two multi-professional teams comprising registered nurses, OTs, mental health support workers, and medical staff supported by a team administrator and team manager.

Scope

The teams provide support and treatment for people in Dorset with a diagnosis of dementia who already access Dorset HealthCare University NHS Foundation Trust secondary mental health care services. The teams provide an urgent care response to needs arising in the community including residential and nursing homes, assess all referrals to determine the appropriate intervention to enable patients to receive care in their normal place of residence and will ‘gatekeep’ access to older person’s mental health in-patient wards.

The teams offer time limited contact with people with dementia for up to six weeks, with the aim of providing the service until such time as the situation has been sufficiently stabilised for ongoing care to be delivered at a lower level of intensity. Where ICSD support and treatment is assessed as completed and a local authority package of care is required, but the package of care cannot be immediately obtained, the ICSD will continue to provide support in the interim. The teams will also offer support to carers and ensure they are able to access a carer’s assessment if required

Aims

• To ensure people who can be treated in their own home or place of residence are supported to do so, instead of being admitted to a mental health hospital;
• To support people to return home or to their normal place of residence earlier within their course of treatment;
• To support family members, carers and care home providers to maintain their caring role
• To provide quality, appropriate care and treatment for service users with dementia in the community;
• To prevent inappropriate hospital admission, and reduce the demand for mental health inpatient beds;
• To manage the increasingly ageing population with co-morbid dementia and physical health problems in the least restrictive settings.

Functions

• To supplement with intensive input the Older people's Community Mental Health services for people with dementia whose condition is such that inpatient admission is otherwise likely.
• To work collaboratively with the physical health Intermediate Care services to manage complex challenging co-morbidity.
• To work with the Crisis and Home Treatment Teams ensuring that people access the service that is appropriate for their need and ensuring handovers and liaison take place between the two services as required
• To work across organic inpatient and community services to provide the most appropriate intensive service for patients with a diagnosis of dementia presenting with particularly challenging behaviours.
• To offer support and guidance to family carers and care home providers to enable their caring roles to be maintained
• To act in a 'Gatekeeping' role and bed management capacity for the organic inpatient services for older people.

The following teams can refer directly to the ICSDs:

• All CMHT-OPs
• Crisis Home Treatment Teams
• Liaison Psychiatry Teams
• (Physical Health) Intermediate Care Services
• MAS
• In-Reach

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ICSD West - based at Forston Clinic

The West team supports Sherborne, Weymouth and Portland, Bridport, Shaftesbury, Dorchester and Blandford CMHT-OPs

ICSD West 01305 361484/01305 361482

Email all referrals to: dhc.icsdwest.referrals@nhs.net

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ICSD East - based at Alderney Hospital

The East team supports Poole South, Poole North, Bournemouth East, Bournemouth North, Bournemouth West, Christchurch, Wimborne & Purbeck CMHT-OPs

ICSD East 0300 7900 213

Email all referrals to: dhc.icsd.referrals@nhs.net

St Brelades Ward is a male assessment and treatment ward for men (generally older adults) with an organic mental health illness and associated complex behaviours. The ward accepts patients with dementia from all over Dorset. A highly specialised Multi Disciplinary Team works closely with community resources and families/carers in the best interests of the person on the ward.

General contact number: Ward Office 01202 305030

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Herm Ward is a female assessment and treatment ward at Alderney Hospital for ladies (mainly older adults) with an organic mental health illness and associated complex behaviours. The ward accepts patients with dementia from all over Dorset. A highly specialised Multi Disciplinary Team works closely with community resources and families/carers in the best interests of the person on the ward.

General contact number: Ward Office 01202 305040

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General information:

Both wards are based at Alderney Community Hospital, Ringwood Road, Poole BH12 4NB.

There is limited parking on site.

There is a bus stop at the entrance to the hospital site.

The nearest train station is at Poole which is 3.4 miles away from the hospital and Bournemouth Train station is only 4.8 miles away.

This link may help you to work out a journey by public transport to Alderney Hospital moovit - getting to Alderney Hospital

Carer's wishing to visit their relatives or loved ones on either ward are asked to contact the ward beforehand to ensure that it is safe and appropriate for visits to take place.

The wards undertake to accommodate as many of the carer's needs and wishes as possible whilst they have someone they care for on the ward at the same time as providing a safe environment for the other people who are there.

Please note that both Herm and St Brelades are wards for people who have an established diagnosis of a dementia with neuropsychiatric symptoms that are very challenging. They are not places to assess whether someone has or hasn’t got a dementia, nor are the beds seen as a place to transfer patients who are nearing discharge from functional wards because a diagnosis of a dementia has been made later in treatment. The Trust has other services that are explicitly designed to offer an alternative to hospital admission wherever possible (such as CMHT-OPs, ICSDs, In-Reach),

The Speech and Language Therapy service, known as SALT teams can assess swallowing and give advice on diet or fluid modification, as well as any changes to positioning, behaviour, utensils, etc, that may reduce any risks for people with dementia.

If there are concerns regarding swallowing, a referral can be made to the local SALT team by any qualified Health Professional, such as a doctor or nurse.

The Trust has a team of Dietitians and Dietetic Assistants who can offer advice on diet and nutritional requirements for those patients who meet their referral criteria. They can also provide training for other health professionals on dietary issues including malnutrition.

Referral Criteria

They can be contacted at their base:

Community & Specialist Dietetic Service

Parkstone Health Centre

Mansfield Road

Poole BH14 0DJ

Tel 01202 733323

Rachel Murray is the only Admiral Nurse in the Trust. She has set up the service in the Purbeck area.

She has over 20 years community experience working with the District Nursing teams in Purbeck and GP practices and says about her role "I always consider it an honour to be welcomed into a home and to offer what help and support I can when individuals and families need comfort and care."

She the first community-based Admiral Nurse in Dorset and shares the vision of Dementia UK, that people living with and affected by dementia should receive compassionate, expert care and individual support that is right for them.

Admiral Nurses are one way of providing the specialist dementia support that families may need. When life with dementia gets difficult and demanding, Admiral Nurses work alongside people with dementia, their families and carers: giving one-to-one support, expert guidance and practical solutions which can be hard to find elsewhere.

Rachel believes that families that have an Admiral Nurses support have "someone truly expert and caring by their side – helping them to live more positively with dementia in the present, and to face the challenges of tomorrow with more confidence and less fear."

Admiral Nurses are continually trained, developed and supported by Dementia UK and in this position Rachel is also offered the same support and development from Dorset Healthcare University Foundation NHS Trust.

NB This is a post part-funded by the local primary care community and dementia UK and is limited to the Purbeck area only.

A Trust Dementia Champion is...

A Dementia Champion is a volunteer with an abundance of knowledge and skills who encourages others to make a positive difference to people living with Dementia in the community. They do this by giving information about the personal impact of Dementia and what they can do to help. They motivate others and act as role models in the delivery of person centered care.

The Dementia Champions roles are currently under review.

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National Dementia Friends Champions

A Dementia Friends Champion is a volunteer who encourages others to make a positive difference to people living with dementia in their community. They do this by giving them information about the personal impact of dementia, and what they can do to help.

It's easy to get involved. Dementia Friends Champions will attend an induction, receive support when they need it, and be part of thousands of other volunteer Dementia Friends Champions creating dementia-friendly communities together.

You can access information on becoming a Dementia Friends Champion by visiting - Dementia Friends Initiative - champions training

Dorset HealthCare's carer's page is Dorset HealthCare - Carer's Information for more information

EAST DORSET

Are you caring for somebody under the age of 65 who has been diagnosed with Alzheimers Disease or any other form of dementia?

Would it help to meet with other carers?

We are holding bi-monthly meeting for carers of a person with young onset dementia. This will be an opportunity to join in discussion and exchange of experience over tea and biscuits with a member of the Community Mental Health Team.

The meeting will take place at the Haymoor Day Hospital in the grounds of Alderney Hospital, Poole on the following dates:

Saturday 18th May 2019 2pm to 4pm

Saturday 6th July 2019 2pm to 4pm

Saturday 7th September 2019 2pm to 4pm

Saturday 9th November 2019 2pm to 4pm

For further details contact Sue Mitchell

(Occupational Therapist) 01202 705568

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Are you living in Bournemouth and Christchurch and caring for somebody who has been diagnosed with Alzheimers Disease or any other form of dementia?

Are you keen to gain information on the condition and how best to help the person you are caring for?

Are you unsure what help is available locally?

Would it help to meet with other carers?

Kings Park Hospital runs a 10 week Carer Support and Education Group that can help answer all of these questions.

For further details contact Sue Mitchell (Occupational Therapist) (01202) 705568

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Purbeck Carer's Course Flyer

Are you caring for someone with dementia? Then you might be interested in the

For the families and friends, caring for someone with dementia in Purbeck:

The 6 week workshop is free of charge and will be held on:

(please note there will be no sessions on 9th and 16th April)

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NORTH AND WEST DORSET

Dementia Workshop

Week 1. Course welcome and introduction. Understanding diagnosis, what is Dementia?

This initial session will set the scene for the course. We will identify the differences between the common types of dementia as well as any other types participants may wish to know more about. We will provide an overview of some of the functions of the brain that can be affected by dementia and how this will affect a person’s ability to manage everyday tasks.

Week 2. Unusual behaviour and wellbeing.

In this and the following session we will discuss types of behaviour participants have observed in the person they care for and consider possible causes and helpful responses, medication and gadgets. We will also consider the impact of common physical health problems on people with dementia.

Week 3. Unusual behaviour and wellbeing.

Continued from previous week.

Week 4. As Dementia advances: changes and care.

In this session we will consider the effects of dementia as it progresses. Discussions will include personal care, incontinence, and changes in mobility, Advanced Directives and care.

Week 5. Caring for someone with Dementia: It can’t be that difficult, can it?

This session will explore the reasons why carers are at increased risk of depression and anxiety. We will discuss how to recognise symptoms in yourself and raise awareness about how to help yourself.

Session 6. Looking after yourself. Where to get help.

Session 7. Contingency planning: Expecting the unexpected.

In this final session we will identify what might constitute a crisis for you and the person you care for. We will look ways to minimise this and consider any obstacles that might prevent you from accessing help. We will also outline what help is available if a crisis is unavoidable.

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NATIONAL

John's Campaign is a campaign started by Nicci Gerard and Julia Jones in Nov 2014.

Behind its simple statement of purpose lies the belief that carers should not just be allowed into hospitals with their loved one, but should be welcomed by those institutions and the staff working in them. It believes that a collaboration between the patients and all those connected with them is crucial to their health and their well-being.

John’s Campaign applies to all hospital settings: acute, community, mental health and the principles could extend to all other caring institutions where people are living away from those closest to them. 1000+ health organisations have signed up to this campaign, including all the major hospital providers in Dorset as well as our Trust - John's Campaign and our Trust

Innovations in Dementia survey exploring changes that can be made to public signs to enable people with dementia to understand them better TAKE THE SURVEY

The Dementia Steering Group meets bi-monthly and is chaired by Consultant Nurse Intermediate Care/Older People Cliff Kilgore. A broad range of professionals in the Trust are part of the group, from both physical and mental health services.

• The duties of the group are;
• To bring together health, social care, education, voluntary and third sector services involved in the delivery of Dementia Care for patients in Dorset.
• To report to and feedback from the wider Dorset Dementia forum’s.
• To share best practice that may influence future service developments and redesign.
• Responsible for the development of local work plans to implement the Dementia agenda
• To monitor the implementation plan by contributing to joint partnership working where appropriate through the development of closer networks.
• To utilise expertise of Dementia Care professionals on delivering the services and supporting the development of skills and knowledge across all sectors through the Dementia Champions network
• To influence and support commissioners in the development of the Dementia Care Clinical Commissioning Partnership agenda.
• To enhance communication between service providers and commissioners.
• To lead on empowering patients and carers by gaining their views on current service provision and future service development.
• To work in collaboration with patient and carer representatives.
• To work in partnership with other clinical groups who address some areas of Dementia Care
• Identify and recommend risk issues to be reported to CCG

DSG Minutes March 2019
DSG Minutes January 2019

This is a list of and links to a number of local and national organisations that are working with the community to help people with dementia in some way. The Trust does not recommend any one service above another, this page is purely for people who may wish to look for community resources or help and assistance with any issues, problems or matters that relate to dementia.

If you feel that a service or resource or organisation that you know about has been overlooked and should be considered for adding to this page please email us HERE

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The National Institute of Clinical Effectiveness (NICE) publish evidence-based guidance on different areas of health care and health conditions - visit This Page to find information related to treatment and care of people with dementia that has a sound evidence base published by NICE

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National Links:

Carers Trust - "Carers Trust believes in a world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives."

Carer's UK - "As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change.

For the past 50 years we've been driven by carers raising their voices together to call for change and seek recognition and support.

Looking after someone can be a rewarding experience but it can also be lonely and bewildering. At these times, you need people around you who really understand caring.

That's where we come in.

We help each other by sharing experiences and offering support. Guided by a Board of Trustees that's primarily made up of carers, we're rooted in the real experiences of our members and we're here to make life better for carers."

Independent Age - Support & Care Information -

"Whatever happens as we get older, we all want to remain independent and live life on our own terms. That’s why, as well as offering regular friendly contact and a strong campaigning voice, Independent Age can provide you and your family with clear, free and impartial advice on the issues that matter: care and support, money and benefits, health and mobility.
A charity founded over 150 years ago, we’re independent so you can be."

Alzheimer's Society - "Alzheimer’s Society is the only UK charity that campaigns for change, funds research to find a cure and supports people living with dementia today."

Dementia Friends UK - Part of the Alzheimer's Society - "Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.

Whether you attend a face-to-face Information Session or watch the online video, Dementia Friends is about learning more about dementia and the small ways you can help. From telling friends about the Dementia Friends programme to visiting someone you know living with dementia, every action counts."

My Life, My Care - "If you find it difficult to live safely and independently in your home, you can find help here. Our solutions offer information and advice to help you make informed choices about living the life you want. To find your solution, start from the menu below."

Alzheimer's Society 'This Is Me' form - "This is me is a simple form for anyone receiving professional care who is living with dementia or is experiencing delirium or other communication difficulties."

Government Dementia Policies - Public Health England webpage with a variety of information about dementia and policies and approaches related to living with the condition and supporting people living with the condition

Age UK - "Age UK is the country's largest charity dedicated to helping everyone make the most of later life.

The over-60s is the fastest-growing group in society and there are more of us than ever before.

Ageing is not an illness, but it can be challenging. At Age UK we provide services and support at a national and local level to inspire, enable and support older people.

We stand up and speak for all those who have reached later life, and also protect the long-term interests of future generations."

PHE Practical Guide to Healthy Caring Booklet - A link to the Public Health England publication. "The advice in this booklet will help those who look after a friend or family member or have any form of caring responsibilities, but it is written to be particularly relevant for those who are about 65 years or older and are new to caring."

Knowing Me! Community Interest Company offering practical guidance for dementia and person-centred care.

Managing the legal affairs of someone with dementia - Information from NHS England about a range of topics related to the law and dementia. "

A dementia diagnosis doesn't necessarily mean you're unable to make important decisions at that point in time.

But as symptoms of dementia get worse over time, you may no longer be able to make decisions about things like your finances, health or welfare. This is sometimes referred to as lacking mental capacity.

You may want to make plans now for a person you trust to make decisions on your behalf.

This means your wishes for your future care can be respected. It'll also help give your family peace of mind."

UK Dementia Research Institute - "

The UK Dementia Research Institute (UK DRI) is a joint £290 million investment from the Medical Research Council (MRC), Alzheimer’s Society and Alzheimer’s Research UK.

The UK DRI breaks new ground by bringing together world-leading expertise in biomedical, care and translational dementia research in a national institute. The institute will grow to be made up of 700 scientists carrying out a rich, varied and integrated programme of research.

The institute will carry out research relevant to all dementias, including Alzheimer’s disease, Parkinson’s disease, frontotemporal dementia, vascular dementia, Huntington’s disease and beyond."

Arts4Dementia - "Artistic stimulation elevates people, their families and carers above the stresses of dementia. Stepping into an arts venue is in itself inspirational.

Arts4Dementia offers arts opportunities to empower people affected by dementia in the community"

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Local Links:

Stepping Into Nature - Guided Activities - "The Dorset Area of Outstanding Natural Beauty (Dorset AONB) covers almost half of Dorset and is part of a family of nationally important protected landscapes.

If you are looking for inspiration to get out and about this winter, the South Dorset Ridgeway Field Guide and Walking Maps are a good place to start, with 10 walks exploring the enigmatic 'Land of Bone and Stone'.

Help & Care - "Help & Care has been working across South-Central England for over 30 years, promoting dignity and independence for all people, particularly people living with a long-term health condition, carers and those who are isolated and/or housebound. What makes us different is our person-centred approach. We understand that each individual has different needs, so we work closely with people to understand what really matters for them and to help them lead independent and fulfilling lives, for as long as possible.

Based in Bournemouth, we offer services across South-Central England.

We can help you

We can speak up on your behalf, offer assistance to manage some day-to-day activities, provide support and advice, and much more. Together we will make your voice heard and find solutions that will help you be happier."

Dorset CCG - Living Well with Dementia Plan - "Welcome to the third edition of the directory of services and support for people with dementia and memory loss, their carers and families.

When someone receives a diagnosis of dementia it can be frightening for them and their loved ones. Having the right information about dementia through all its stages, knowing where to find support, how to apply for any relevant benefits and the legal aspects of the disease can be invaluable.

With this in mind we have gathered together as much information as possible on these and other topics such as keeping well and keeping active, which we hope you will find helpful.

The booklet has been compiled by the NHS Dorset Clinical Commissioning Group and Dorset HealthCare, in partnership with Bournemouth Borough Council, the Borough of Poole, Dorset County Council (Learning and Development), Age UK, Alzheimer’s Society(Dorset) and local community groups."

Dementia Action - Local Alliances - "A Local Dementia Action Alliance (LDAA) is an easy structure for creating a dementia Friendly Community.

An LDAA is a group of people representing different sectors within an area who have come together to create a DFC alongside local people affected by dementia.

A LDAA can be established at any level, be it a village, city, county or even a region. They can overlap geographically and member organisations are encouraged to participate in more than one community."

Dorset Carers Advocacy - "Local Authorities in Bournemouth and Poole want carers to tell them about their experiences, to help them to improve services.

Dorset Advocacy is supporting carers to do this. Meetings are open to all carers of someone with a learning disability. You don’t need lots of time or experience, just the enthusiasm to share your ideas."

Prama Care Care Agency - A local charity providing care for local people with a CQC rating of GOOD in 2017.

Dementia Partnerships Information - "The Dorset Dementia Partnership is made up of people who represent different organisations across health and social care, such as the local authorities. It also includes, amongst others, employees of the fire brigade and the police, as well as people living with dementia and their carers."

Helping Hands Home Care - "The flexibility of homecare enables you to live safely and comfortably in the home you know best. From daily or weekly care visits right through to the dedicated support of a live-in carer, there are plenty of home care services available – and even on a temporary basis.

By choosing Helping Hands homecare, you’re safe in the knowledge that the support is fully regulated by the Care Quality Commission and Care Inspectorate Wales. With 30 years’ experience in the sector, we’re widely recognised as one of the UK’s top home care providers, and the only one that is endorsed by Skills for Care as a Centre of Excellence.

Offering the full range of home care services, you can flex your service to match your current needs, whether that’s switching between a live-in carer and a visiting carer or receiving nursing care if your health care needs have changed. We’re here through it all, to fully support you."

iSpace - "iSPACE is a number of actions designed to improve the patient experience through delivery of a set of improvements in care planning, communications and awareness of dementia for staff in primary care settings.

The Wessex Academic Health Science Network has funded a project to make GP surgeries dementia friendly. This was piloted in Hampshire, implemented on the Isle of Wight and then evaluated by the Wessex AHSN Centre for Implementation Science at the University of Southampton. This project has shown good outcomes for patients and is now being spread across Wessex.

I – Identify a dementia champion,

S – Staff Training,

P – Partnership working with patients, carers, and the voluntary sector,

A – Assessment and oversight of use of anti psychotics

C – Care planning and use of tools such as ‘This is Me’,

E – ensure the environment supports people with dementia and other disabilities.

This work is now being spread across Wessex with 143 surgeries in the process of becoming dementia friendly. The programme is often carried out in conjunction with the Dementia Action Alliance and groups who wish to make their communities dementia friendly."

Wessex FaithWorks - "Faithworks Wessex - a local charity helping people get out of crisis and isolation.

We believe there is always Hope.
Hope to get debt free…
Hope to rebuild self-confidence as a lone parent or carer;
Hope to get off the street…
Hope while living with dementia or the memories of domestic abuse…"

The Leonardo Trust - "The Leonardo's trust is a charity which provides funds for full-time carers to have a break, help pay for respite, or other needs."

Dorset Computers4Carers - "Many people who care at home, full-time, for someone they love can feel socially isolated, lonely and unsupported. Often they can’t leave the person they care for, and replacement care is too expensive, which means that meeting up with friends, or even a relaxing walk around the shops, is impossible for them."

Dorset Adult Safeguarding Board - "Safeguarding is everybody's business. The Board exists to protect adults at risk from abuse, significant harm or neglect. We will achieve this through strategic leadership and collective accountability." (You are able to report suspected abuse on this link and to view local policies and procedures for dealing with safeguarding issues.)

Dorset Child Protection - Information page with contact details if you suspect a child me be being abused

Dementia Friendly Communities in Dorset - "The Prime Minister’s Challenge on Dementia (2012) included creating dementia friendly communities. This section illustrates local initiatives to enable people to live well with dementia." - information from the Dorset Dementia Partnerships

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The Ageing & Dementia Research Centre (ADRC) at Bournemouth University (BU) brings together cross-faculty research expertise in areas of ageing and dementia. At a time when our population is living longer and often with long-term conditions including dementia, the centre’s research significantly impacts on theory, education and professional practice.

The aim of ADRC is to use the team’s collective expertise to develop person-centred research which will improve the lives of people with dementia and their families. Their research falls under three broad categories – developing ageing & dementia friendly environments, nutrition & wellbeing and activity & social inclusion. Each topic builds on a wealth of research knowledge and projects already taking place at BU. More information can be found on their website ADRC

The ADRC is led by Professor Jane Murphy and Professor Jan Wiener, supported by staff and students from the Faculty of Health & Social Sciences and the Faculty of Science & Technology.

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Dementia Specialist Nurses in General Hospitals

The three acute general hospitals, Royal Bournemouth, Poole and Dorset County all have their own dementia specialist nurses who work closely with DHUFT Trust services to offer some clinical support to people identified with dementia on their wards, linking with the Trust's Psychiatric Liaison Services in each hospital and to some of the Trust's community dementia services. They each have different remits according to the hospital Trust they are employed by. Some offer more training to staff and signposting to other services (Poole), some offer more individual clinical support on the wards (Royal Bournemouth) and some offer a very specific consultancy service to assist ward staff to manage better (Dorset County).

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Recommended reading:

ABC of Dementia

Bernard Coope (Editor), Felicity Richards (Editor)

ISBN: 978-1-118-47402-0

Apr 2014, BMJ Books

This book has been edited by Dorset Healthcare University Foundation NHS Trust Consultants Dr Bernie Coope and Dr Felicity Richards and can be ordered from Tomlinsons Book Service with a discounted price of £18.95. It is recommended reading for all staff involved with working with people who have dementia and would be a valuable resource for all teams.

NB: This book is due to be reviewed and published in the up-to-date version in 2019

"ABC of Dementia is a practical guide to help healthcare professionals develop knowledge, skills, confidence and an understanding of dementia, in order to support those with dementia to live well.

It begins with the cognitive disabilities and underlying brain diseases that define dementia, before moving on to diagnostic assessment and early intervention for dementia. There is a focus on the experience of the person with dementia and their families, highlighting the journey from diagnosis to end of life, including the role of person-centred care, and the limited therapeutic options available.

Separate chapters address dementia in acute hospital settings, primary care, and care for those with the most severe challenges, as well as the specific needs of younger people developing dementia. The ethical and legal context of dementia care is also outlined.

From a multidisciplinary author team, ABC of Dementia is a valuable resource for general practitioners, family physicians and other health care professionals caring for patients with dementia and related disorders. It is also relevant for geriatricians, psychologists, specialist and practice nurses, and nursing home staff."

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A research project by the Alzheimer's Society which anyone with a smartphone can do:

"You can help us drive dementia research forward simply using your smartphone.

1. Sign up to the GameChanger research project
2. Download the app to your smartphone
3. Begin playing fun, free brain games!"

Gamechanger - the smartphone game app YOU can play to support dementia research

There are four specific medicines licensed to treat Alzheimer's dementia, three of these are acetylcholinesterase inhibitors (Donepezil, Galantamine and Rivastigmine) and the fourth is an NMDA Receptor Agonist (Memantine).

None of these medicines can cure dementia, but they may help with slowing down the advancement and process of the disease and may also help reduce some symptoms.

Information for Patients: Leaflets on medicines in dementia

Alzheimer's Society drugs for BPSD

NICE Guidance on Medicines in Dementia

British National Formulary (BNF) - Dementia

RCPsych: Advice on dementia and memory problems

RCPsych: Advice on Alzheimer's treatment

Bournemouth University have a free workbook on nutrition in dementia available from: www.bournemouth.ac.uk/nutrition-dementia

There are often changes in appetite and complications of the natural reflexes of swallowing ability with people who have dementia (known as Dysphagia) and this must be addressed to prevent risk of harm.

Eating and Drinking in Dementia - SALT teams

Dementia can affect the ability to eat and drink safely. Someone with dementia may forget to chew, putting them at risk of choking or aspirating. They may also forget to swallow, or get distracted and confused during mealtimes which can make it difficult to maintain nutrition and hydration. The SALT services can assess swallowing and give advice on diet or fluid modification, as well as any changes to positioning, behaviour, utensils, etc, that may reduce any risks.

The Wessex Academic Health Sciences Network (WAHSN) undertook some work into hydration in care homes and a video and toolkit are available below

WAHSN Hydration Project Video

WAHSN Toolkit for Hydration

The Dementia Services Review (DSR) is a co-produced process led by the CCG which is currently underway in Dorset. The review group is carefully exploring possible future of models of care, support, treatment and service provision for people living with dementia and their carers. This is being done in consultation with a broad range of people who are affected by dementia (professionals, community resources and service-users).

The Dorset CCG Dementia Review

We are expecting the public consultation to take place in the spring of 2019 over an eight-week period and the CCG will be using a range of ways to consult with people all over the county. Look out for information nearer the time and please encourage your colleagues, patients, carers and neighbours to have their say.

Royal College of Psychiatrists National Audit of Dementia pages

Dementia report 2017: key recommendations

These are the key recommendations from the National Audit of Dementia Care in General Hospitals 2016-17.

There’s a full list of recommendations on page 87 of the full report (pdf) and the report also details recommendations on a theme by theme basis.

Delirium

Medical and Nursing Directors should:

Ensure that hospitals have robust mechanisms in place for assessing delirium in people with dementia including:

• At admission, a full clinical delirium assessment, whenever indicators of delirium are identified
• Cognitive tests administered on admission and again before discharge
• Delirium screening and assessment fully documented in the patient’s notes (regardless of the outcome)
• Care offered in concordance with the delirium evidence-base recommendations when the assessment indicates symptoms of delirium.
• Results recorded on the electronic discharge summary
• Ensure staff receive training in delirium and its relationship to dementia, manifestations of pain, and behavioural and psychological symptoms of dementia.

Personal information use

National Commissioners (Welsh Government, NHS

England) should propose a nationally backed monitoring programme aimed at embedding the collection, sharing and use of person centred information.

This should include a clear expectation that once gathered, this information will follow the patient between providers, and this will be monitored.

• Ward Managers should audit implementation/use of personal information collected to improve care for patients (e.g. This is Me or other locally developed document). The result of the audit should be fed back to the dementia champions/dementia lead and ward staff.

Nutrition

• Clinical Commissioning Groups and Health Board commissioning services should ensure that tenders let by Trusts for new catering contracts always specify provision of finger foods for main meals and access to a range of snacks 24 hours a day.
• Medical and Nursing Directors should promote the attendance of key carers to support care, but ensure that this is complementary to, and not instead of, care delivered by staff. The level of input by carers, and how carers feel about the level of input they have been asked to deliver should be monitored through carer feedback, complaints and PALS enquiries. Carer satisfaction should be seen as a marker of good care. Ward managers should be supported to ensure carers supporting patients should not be asked to leave at mealtimes/stopped from helping with meals (this excludes emergency and urgent care and treatment).

Dementia Champions

The Chief Executive Officer should ensure that there is a dementia champion available to support staff 24 hours per day, 7 days per week. This could be achieved through ensuring that people in roles such as Site Nurse Practitioners and Bed Managers have expertise in dementia care.

Decision making

The Safeguarding Lead should ensure that staff are trained in the Mental Capacity Act, including consent, appropriate use of best interests decision making, the use of Lasting Power of Attorney and Advance Decision Making. Training should cover supportive communication with family members/carers on these topics.

If you are affected by dementia and would like to meet others in a similar situation, you are welcome at our groups.

EAST DORSET

Activities in Bournemouth and Poole

Natural Choices leaflet - activities from Livewell Dorset

Livability's Flourish Project @ Holton Lee - leaflet

Dementia Friendly Group @ Holton Lee

Future Roots - Countrymen's Club @ Rylands Farm, Dorchester - Future Roots run programmes for men aged 50+ from Rylands Farm, which is known as The Countrymen’s Club and also a separate club for their carers.

Activities are tailored to the preferences of the group & needs, which can be very broad ranging and include working with animals and spending time touring the farm and discussing changes, through to picking fruit or vegetables and then cooking a meal to be shared. Other activities include art therapy, traditional songs and poems, general woodwork or small building projects. Building projects are driven by the needs of each site so usually relate to agriculture or horticulture. Workshops are available on both sites. Many sessions include an element of reminiscence through involvement in current issues.

The Countrymen's Club is on Tuesday afternoons and transport is available to collect men from Dorchester through to Cerne and Sherborne.

We welcome your input on the way we do things at Dorset HealthCare NHS Trust.

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