Dementia Support Your guide to local support in the Royal Borough of Greenwich Royal Borough of Greenwich May 2017 Supported by 1
Introduction This guide provides information about dementia and its effect on people and their carers. It outlines support available to people living within the Royal Borough of Greenwich who are concerned about their memory, and people who have been diagnosed with dementia, their carers and family members. This guide is part of the Council and its partners on-going efforts to support people with dementia and make everyday life easier by becoming a dementia-friendly borough. Visit www.greenwichcommunitydirectory.org.uk for more information or email: dementia@royalgreenwich.gov.uk What is dementia? If you, a friend or relative, have been diagnosed with dementia, you may be feeling anxious or confused. You may not know what dementia is. This booklet should help answer some of your questions about dementia, including what causes it and how it is diagnosed. The term dementia describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer s, and Vascular dementia, which is caused by a series of small strokes. Dementia is progressive, which means the symptoms will gradually get worse. How fast dementia progresses will depend on the individual person and what type of dementia they have and the action they take towards maintaining an active mind and body. What causes dementia? There are several diseases and conditions that result in dementia. These include: Alzheimer s disease - the most common cause of dementia. During the course of the disease the chemistry and structure of the brain changes, leading to the death of brain cells. Problems of short-term memory are usually the first noticeable sign. Vascular dementia To be healthy and function properly, the brain cells need a good supply of blood. If the vascular system within the brain becomes damaged and blood cannot reach the brain cells, the cells will eventually die. This can lead to the onset of Vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes 2
What causes dementia? Cont d Dementia with Lewy bodies this is a form of dementia which shares characteristics with both Alzheimer s and Parkinson s disease. It gets its name from tiny abnormal structures that develop inside nerve cells. Their presence in the brain leads to the degeneration of brain tissue. Symptoms can include disorientation and hallucinations, as well as problems with planning, reasoning and problem solving. Memory may be affected to a lesser degree. Lewy bodies are also found in the brains of people with Parkinson s disease, a progressive neurological disease that affects movement. Many people who are initially diagnosed with Parkinson s disease later go on to develop a dementia that closely resembles Dementia with Lewy Bodies. Fronto-temporal dementia (including Picks disease) in fronto-temporal dementia, damage is usually focused in the front part of the brain. At first, personality and behaviour changes are the most obvious signs. Rarer causes of dementia There are many other rarer diseases that may lead to dementia, including progressive supranuclear palsy, Korsakoff s syndrome as a result of heavy alcohol consumption, Binswanger s disease, HIV/AIDS, and Creutzfeldt-Jakob disease (CJD). Some people with Multiple Sclerosis, Motor Neurone disease, Parkinson s disease and Huntington s disease may also develop dementia as a result of disease progression. Other causes of dementia-like symptoms Dementia-like symptoms can be caused by other conditions, including depression, urinary tract infections and vitamin deficiencies. Other possible causes of dementia-like symptoms could include poor hearing or sight, severe emotional upsets (e.g. bereavement) or the side effects of certain drugs or combinations of drugs. 3
Mild cognitive impairment Some individuals may have noticed problems with their memory, but no impairments in other areas of the brain function; such as planning or attention and no significant problems in everyday living. In this case a doctor will give a diagnosis of mild cognitive impairment. However people who have mild cognitive impairment are at an increased risk of going on to develop some form of dementia. A doctor may feel that the symptoms are not severe enough to warrant a diagnosis of Alzheimer s disease or another type of dementia, particularly if a person is still managing well. When this occurs, some doctors will use the term mild cognitive impairment (MCI). For further information on different types of dementia, rarer causes of dementia, and mild cognitive impairment are available from the Alzheimer's Society. In addition to these you will find factsheets on Benefits, Financial and legal affairs, Driving and dementia and many more These are free to download from alzheimers.org.uk/factsheets What signs should I look for? Dementia is not a single illness but a group of symptoms caused by damage to the brain. The symptoms include: Memory loss such as remembering past events much more easily than recent ones, for example, people with dementia might forget what happened earlier in the day, or they may forget the way home from the shops. Problems thinking or reasoning or finding it hard to follow conversations or TV programmes. Some people might find it hard to find the right words for things and describe the function or an item instead of naming it. Feeling anxious, depressed or angry about memory loss, or feeling confused, even when in a familiar environment. People with dementia may be withdrawn, sad or frightened about what is happening to them. In the later stages of dementia, the person affected will have problems carrying out everyday tasks and will become increasingly dependent on other people. Why is getting a diagnosis important? An early diagnosis can help people with dementia get the right treatment and support. With treatment and support, many people are able to lead active, fulfilling lives. 4
Some people can wonder what is happening to them and be worried and anxious about the changes they may have noticed. Although being diagnosed with dementia can be an upsetting experience, it can also be a relief knowing the causes of the problems which can resolve the anxiety felt by the person and their family. Some people may lack insight into their illness and be in denial that they have a problem. Such people should be encouraged to get treatment even if initially they are reluctant to seek help. Getting an early diagnosis gives you and your family time to plan for the future and to find out what help and support is available to help you now and in the future. Diagnosing dementia Your GP is the first person to consult. Your GP will conduct assessments which can include conversations with the person being diagnosed and those close to them, a physical examination and a basic memory test too. Often, people are not diagnosed with dementia until their symptoms begin to affect their quality of life and their ability to carry out everyday activities. In recent years, however, treatments that can improve the symptoms of a type of dementia known as Alzheimer s disease have become available; these include medication such as Donepezil (Aricept), Galantamine (Reminyl), Rivastigmine (Exelon) and Memantine (Ebixa). Other treatments that may slow down the progression of the disease in the brain are also being developed. Therefore, it is important that people with Alzheimer s disease are identified as early as possible, so that they can benefit from these treatments in the future. It is also important for your GP to work with you to reduce the risk of getting vascular dementia e.g. by reducing high blood pressure and other treatments to reduce the risk of strokes. Referral Pathway If you are concerned about your memory, just follow these steps: Concerns about memory See your GP about the concerns, and to rule out any other causes Referral to the Memory Service for an in-depth memory test Referral to other services to address other causes 5
A GP will want to see if there is an explanation for your memory problems and check if there is a condition that can be readily treated. You may be asked to have a blood test too. The memory service can see everyone referred by a GP. Upon receipt of a referral from the GP, the Memory Service will offer you an appointment for a first assessment usually within 4 weeks. At this appointment the member of the team will ask you for in depth information about your health and how your memory problems are affecting your day to day life. They may ask you to go for a brain scan or for a heart test (ECG). You will be offered a second appointment to discuss whether or not you have dementia, and to look at what treatment and services are available. Depending on what other help you need, and if you are prescribed medication, you may be offered more appointments at the clinic. Your GP will be kept informed of your assessment, diagnosis and treatment plan too. Community support services for people with dementia in Greenwich Support services for people with dementia in the Royal Borough of Greenwich are available through your GP, Alzheimer s Society, local Oxleas NHS services e.g., Memory Service and Community Metal Health Team, and Royal Borough Greenwich Social Services, as well as other independent, voluntary or charitable organisations. A full list of voluntary and statutory sector run groups is here: Alzheimer s Society Dementia Support Services Alzheimer s Society provides information and support for people with dementia, their carers and their families living in the Royal Borough of Greenwich. Anyone who is worried about their memory or who has been diagnosed with dementia can contact them for advice and support on: Maintaining everyday skills Coping with memory loss Safety in the home Keeping active and staying involved Benefits Understanding and respecting the person with dementia Enduring power of attorney and lasting powers of attorney Help to access local services Respite care Driving Finance 6
Alzheimer s Society Dementia Support Services Cont d The Dementia Advisers provide information, advice and signposting services to people in the process of getting a diagnosis or from diagnosis of dementia onwards. They can support people affected by dementia to make informed decisions. The Dementia Adviser works in partnership with the Memory Service. The Dementia Support Workers provide support for the person with dementia, and their carer when more support is needed. They offer support to people with dementia and carers through home visits, telephone contact, email and post. Oxleas NHS Foundation Trust - Diagnosis and Support Greenwich Memory Service - The memory service is for people with memory loss and dementia. They provide diagnosis and intervention for people who are concerned about changes in their memory. Clinics are held in the Memorial Hospital. Services Delivered by the Greenwich memory service include: Living Well with Dementia Information Session This is an information session for people who have been recently diagnosed with dementia and their relatives. The session provides an opportunity to meet the Alzheimer s Society and explore adaptive technologies. Cognitive Stimulation Therapy a group programme aimed to increase confidence, communication, quality of life, functional and cognitive ability. Carers Education Group - The group is for carers of people with dementia. The group is a chance to meet other carers and provides education and information around dementia. The group meets once a week for eight weeks. Carers Support Group A group for people supporting those living with dementia, exploring how people cope and sharing their experiences. The group meets once a week for nine weeks. Living Well with Dementia Group This group is for people who are struggling to come to terms with their diagnosis of dementia. The group meets once a week for nine weeks. Group Referrals If you are attending the Memory service speak to your Care Co-ordinator about the groups. If you are not accessing the Memory service you can ask your GP to refer you, or you can also speak to your Dementia Advisor. 7
Community Mental Health Team for Older People This service provides specialist health services to older people with mental health needs in the Royal Borough of Greenwich. Community Adult Mental Health Services - provides specialist assistance for adults who require mental health support. Oxleas Services contact information Oxleas main number Greenwich Memory Service CMHT Community mental health team CAMHS Community Adult mental Health Service Rowntree Centre Memorial Hospital Shooters Hill Greenwich London SE18 3RG Memorial Hospital London SE7 8JH Recovery Team 68 The Heights London SE7 8JH 01322 625 700 www.oxleas.nhs.uk 020 8836 8519 020 8836 8520 020 8836 8521 020 8836 8670 020 8836 8671 020 8269 4110 020 8269 4160 Community and voluntary services contact information Alzheimer s Society Expert dementia advice and support Alzheimer s Society Wolsley House, Wolsley Close, Crayford, DA1 4BE 01322 524 950 dagreenwich@alzheimers.org.uk www.alzheimers.org.uk National Helpline 0300 222 1122 8
Independent Advocacy Advocacy for Older People 020 8269 0298 Provides independent advocacy for people over 55. info@afop.org.uk Greenwich Advocacy Partnership 020 8305 5003 Provides independent advocacy for people with mental health, learning disabilities and physical disabilities GAP@metrocharity.org.uk Information & Advice Age UK Bromley and Greenwich 020 8315 1878 Provides information, advice and support for people over 50. info@ageukbandg.org.uk www.ageuk.org.uk/bromleyandgreenwich/ Greenwich Carers Centre 0300 300 2233 The Carers Centre Provides light touch information and advice for carers via text, email and social media, as well as telephone and face-to-face support. info@greenwichcarerscentre.org www.thestablesse7.com Greenwich Mind 020 8853 2395 Provides information, advice and support for people with mental health problems including welfare and benefits, and signposting to services. mindline@greenwichmind.co.uk www.greenwichmind.co.uk 9
Volunteering and Befriending GIV Network Phone 0300 300 2233 Tackling social isolation for vulnerable residents, through use of volunteers, to support others that are disabled, and through enabling isolated and vulnerable people to become volunteers themselves. giv@greenwichcarerscentre.org www.thestablesse7.com Crossroads Phone 01322 336 086 Supports adults and older people with access to activities, respite care, short breaks, packages of care, Volunteers befriending, supported living, and light domestic duties info@ccsel.org www.crossroadscaresoutheastlondon.org.uk Listening Ears Phone 020 3583 3032 Volunteer befrienders for people 55 and over with disabilities. Offering weekly visits to reduce isolation and improve quality of life. help@listeningears.org www.listeningears.org Volcare Carers Support Phone 020 8302 0198 Fortnightly respite provision for Carers by full time volunteers. Care is provided in the carers homes to allow short breaks or short holidays from caring responsibilities greenwichvolcare@carerssupport.org www.carerssupport.org Please note: All information complied in this booklet is checked for accuracy at the time of production, details may be subject to change, or may include errors outside of the control of the Royal Borough of Greenwich. Therefore we cannot be held responsible for any inconvenience caused nor accept any liability arising from use or reliance upon this information. For more information visit: www.greenwichcommunitydirectory.org.uk or email: dementia@royalgreenwich.gov.uk 10