DementiaDementia is a degenerative mental illness; it is not a disease but a group of symptoms or conditions which affect the brain. Signs include memory loss, thinking and reasoning. People with dementia may also have problems controlling their emotions or behaviour. Dementia usually affects a person’s mental health gradually over a number of years.
The different types of dementia are: Alzheimer’s, Vascular, Lewy bodies and frontotemporal dementia.
Dementia cannot be cured but it can be managed or slowed down, in some cases with medicine and mental activities and stimulation.
Being a carer for someone with dementiaCaring for someone with dementia can often be challenging and sometimes extremely demanding. People with dementia may have problems carrying out everyday tasks such as caring for themselves, maintaining their house, cooking, basic hygiene, or even going to the toilet. Do your best to be patient, kind, flexible, supportive and calm.
Because people with dementia may be confused or forgetful they may sometimes behave in an unusual or unexpected way and this is something that a carer needs to prepare for. Initially any unusual behaviour may not be apparent, but over time such behaviour may become more obvious and seem embarrassing, alarming or unnerving. People with dementia should be treated in a calm and gentle manner even if they are not acting that way themselves.
If you suspect the person you care for may have dementia it is essential you get a diagnosis as soon as possible. They must see their GP as soon as possible; the GP will be able to refer them to a specialist for an assessment
Although someone with dementia may have lost their ability to carry out some tasks, it is important that their carer doesn’t patronise them, but instead helps them to live as independently as possible. It is important that the person with dementia is encouraged to do as much as possible for themselves and that they are praised and rewarded for their achievements.
Looking after yourselfAs a carer it is important that you take the time to look after yourself and your own wellbeing as well as that of the person that you care for.
Help and support for dementia carersThere is help and support available for carers of dementia sufferers. The type of support includes advice and information, financial assistance and emotional help. Carers should contact their local authority or Citizens Advice Bureau to make sure that they and the person they care for are getting all the help that they are entitled to. Carers may also find it helpful to talk to other people in a similar situation. There are support groups for carers; contact ICIS to help you find a local group - Tel: 0800 859929.
The Pain of Living with Dementia (3.6.13)
This new video on the West Sussex County Council website tells the story of two women with dementia, and how their families struggle to cope as the condition worsens. Watch the video at www.westsussex.gov.uk
New survey to gather views of carers of people with dementia (added 11.3.13)
Carers Trust are inviting people who care for someone with dementia to complete their survey which is part of a new research project to help understand this group’s needs and improve future services for them. Chief Executive, Thea Stein said: “Carers support people with dementia to stay independent for as long as possible, and when the dementia advances, they provide support which delays the costs of residential care. However many carers say they feel unsupported and uninformed on the condition of the person they care for.” As well as being available online: (http://surveys.firefly-research.co.uk), a paper copy of the survey can be downloaded www.carers.org
Money guide for people with dementia and their carers (added 11.3.13)
A guide to help people with dementia and their carers deal with personal finances has been launched. The guide is an inititaive between Lloyds Banking Group, Alzheimer's Society and Alzheimer Scotland in which they plan to find ways to make the banking sector more 'dementia friendly'. The guide will encourage people with dementia, their family members and carers to think about what they need to do to future-proof the management of their finances. Angela Rippon, co-chair of the Dementia Friendly Communities Champion group and Alzheimer's Society ambassador said: "Dealing with finances when you are living with dementia can be a minefield. People in the early stages of the condition often feel locked out of the system, with all the many passwords and personal details they are expected to remember. Read more at: www.yourmoney.com
Dementia Friends (added 15.11.12)
Do you really know what dementia is and what it’s like to have it? It makes a huge difference to people with dementia if those around them know what dementia is and how it might affect them. Dementia Friends aims to make everyday life better for people with dementia by changing the way the nation thinks, talks and acts. By 2015, we want there to be a million people with the know-how to help people with dementia feel understood and included in their community. Dementia Friends is an Alzheimer's Society initiative. Find out more at www.dementiafriends.org.uk
Dementia patients and carers helped by new website (added 7.1.13)
An online public information service has been launched across the South of England which provides information for dementia and stroke patients and their carers. The ‘Our Health’ website aims to transform the way patients, their carers and health professionals access and share information on a range of key local health and care services across the south. www.ourhealth.southcentral.nhs.uk
New guide launched for carers to help people with dementia in pain or distress (added 17.12.12)
A new guide has been launched for carers of people with dementia giving advice on how to help with pain and distress. The guide ‘How would I know’ has been published by the National Council of Palliative Care as part of the Prime Minister’s Dementia Challenge. It offers a range of tips to help carers and health and care professionals identify whether someone with dementia may be in pain or distress. It also gives advice on what may be causing this and a range of possible solutions. Download the guide from www.carehome.co.uk
10 Glorious Seconds (added 17.2.12)
This is a short drama about the difficult journey to make a connection with a loved one living with Alzheimer’s. With so much misunderstanding around the disease, the film depicts a very human example of the struggles of caring for someone with dementia. Watch 10 Glorious seconds at http://carewelluk.org
Normal aging vs dementia: What to look for (added 16.12.11)
We all get older, it is one of those unpleasant but inevitable things that we all eventually have to deal with. There is, however, a difference between the normal effects of aging and what dementia does to your mind. So what is normal aging, and what is dementia? What are the signs you should be looking out for and is there anything you can do to try and prevent or off-set the progression of dementia? Read this Ezine Article Source: http://EzineArticles.com
Supporting a person with dementia during visits, holidays and celebrations (added 11.11.11)
Religious festivals, public holidays and celebrations such as weddings are important social occasions, but they can be stressful for people with dementia, their carers and their family. It is important that people with dementia have the opportunity to enjoy these special events; however, a change in routine can be very disorienting and they may become distressed or confused. To read the factsheet from the Alzheimer's Society which offers tips to people who are hosting or visiting a person with dementia, so that everyone has a relaxing and enjoyable time, visit www.alzheimers.org.uk
Lifetime - magazine for older people who have trouble with their memories (added 7.11.11)
Lifetime is a large print magazine for older people who like reading, but who are beginning to have trouble with their memories. It is written and published by Jude Irwin, whose parents both have dementia. Each issue costs £1.65 plus postage. If you would like to know more, or would like to subscribe,visit: www.lifetime-memorymag.co.uk, email: email@example.com or phone: 01434 600889
GPS tracking locator for people with dementia (added 16.5.11)
Chichester Community Careline has launched Mindme, a small GPS locator. If a person becomes lost or disorientated, they can be located through a dedicated website by their family or Chichester Community Careline. The GPS sends details of its location to the website every four minutes and has a battery life of 18 hours. For more information contact Chichester Community Careline on 01243 788688 or email firstname.lastname@example.org
Dementia brain tour (added 21.1.11)
Free educational video resource that includes chapters on the brain and how brain cells function, Alzheimer's disease, Posterior Cortical Atrophy, vascular dementia, dementia with Lewy bodies, fronto-temporal dementia and other rarer causes of dementia. Watch the video at www.alzheimers.org.uk
Talking Point - online support
Talking Point is a virtual support group for anyone affected by dementia to ask for advice, share information, join discussions and feel supported. Visit www.alzheimers.org.uk/talkingpoint, click on the Register link in the middle of the page and follow the on-screen instructions.
Dementia and Driving factsheet
Many people with dementia fear they will automatically lose their driving licence, or are in denial about struggling to drive safely, so do not always contact DVLA. Concerned carers may contact the DVLA and will be sent forms to fill out on the person's behalf, but this may cause a dilemma due to feelings of guilt or betrayal. A free factsheet with advice on this topic is available to download from www.alzheimers.org.uk/factsheets. A short booklet, Dementia and driving is also available for people with dementia to read.
Singing for the Brain videoVideo from NHS Choices which uses singing and other activities to bring people with dementia or memory loss together. Watch a group of participants and their carers talk about the service's benefits. Watch the video here (added 19.11.10)
Living Well with Dementia (added 25.10.10)
The Department of Health’s ‘Living Well with Dementia’ programme has teamed up with Horsesmouth, a free informal mentoring website, to build the biggest network of online dementia mentors in the country. The aim of the project is to get people who have experience of dementia to help others. Anyone can sign up as Living Well with Dementia mentor from family carers to professionals. Read more at www.dh.gov.uk
You can get more information from:
There are people who can help:West Sussex Carers Support Services
Dementia CafesYour local Carers Support Service may have information on Dementia Cafes. These cafes provide access to information about local services and other opportunities in the local community to help people regain their independence and confidence. It also gives a chance for people with dementia and their carers to meet, chat with, and support other members.
To find a dementia café near you, visit our Events page and under Type, click on Social and Leisure.
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