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A dementia diagnosis can often come as a shock and you may need time to adjust.
Following this, many people find that by making some changes, they can continue to live well and have a fulfilling life.
The Social Care Institute for Excellence has produced an award-winning video exploring how six people have made adjustments following their diagnosis, so that they can continue to live well.
Planning early for the future
Creating a care plan
Following diagnosis, your GP will work with you to produce a care plan. This can also include input from your family and friend carer. The plan has a medical focus and will include your medical history, care in an emergency, and information for out-of-hours services.
Having early conversations
It is also important to have early conversations about your future, to plan for any additional support you may need, manage your finances and make legal arrangements such as wills and powers of attorney.
This is Me is a simple leaflet that can be used to record details about a person who can't easily share information about themselves. You can download it or order a free copy on the Alzheimer’s Society website.
If there is a risk that the person you are caring for might get lost or go missing, you may want to complete the Herbert Protocol Safe and Found tool. It contains a list of information and a recent photograph to help emergency services if the person goes missing. To find out more visit the Sussex Police website.
Dementia Guide - planning ahead
Chapter 4 of the Dementia Guide provides comprehensive information on planning ahead following a diagnosis. It includes financial matters, benefits and entitlements, and making decisions for the future, alongside practical issues such as driving and working.
Carewise - planning your finances
Planning ahead for long-term care can help you to manage your finances and give you and your family peace of mind.
The Carewise care funding advice website explains how you can access expert, impartial advice that helps you and your family to make informed decisions about paying for care.
Keeping well and active
The Alzheimer's Society’s website explains why keeping physically active is important for people living with dementia. It also gives examples of suitable exercises and physical activities for people in different stages of dementia.
The NHS website includes information on the sorts of activities – physical, mental, social and creative – that can help you to live well with dementia and improve your wellbeing.
Staying connected with people
Social interaction is very important for our wellbeing. It can help to boost mood, ease stress and stimulate our brains. This may help to slow the progression of dementia.
Paul was diagnosed with Pick's disease in his 50s. His wife Penny explains how the clubs that Paul has taken part in have been a great help to both of them.
Initially Paul refused to visit any clubs as he felt they were for the elderly. I have to agree I felt the same. What Paul needed was something that could enable him to keep up his hobbies and enjoyment.
Paul feels he has now made friendships with others living his journey and with the wonderful people caring for him, having found suitable clubs.
Paul’s needs are met very well and he comes home and can engage in conversation about what he's been up to, which for me is very special. It has boosted his confidence and has given him a sense of belonging and feeling of worth - this is something he lacked for some time before the clubs.
For me, it meant I could continue my role in a job which I feel very passionate about. This enables me to immerse myself and gives me the opportunities to have a break from caring.
Specialist day services
West Sussex County Council runs a number specialist day services, offering activities, support and community opportunities. You can find out more about the day services, including costs, on the County Council's website.
West Sussex Library Service
The library service offers a range of books and resources for people with dementia and their family and friend carers to help them live well. These include a Reminiscence Collection, Reading Well Books on Prescription for Dementia and a Memory Management Library card.
Visit the dementia section of the library service's website for more information.
Support and advice for carers
Caring for someone with dementia can be demanding and it is important that you are able to focus on your own wellbeing, as well as the person you are caring for.
Carers Support West Sussex has created a dementia carers toolkit, which provides support and information about our services and those of our partners to support you. You can access all of the support services offered by Carers Support by registering with them as a carer.
You can also find useful information, advice and resources for carers on the Carers Hub of this website.
Living alone as a person with dementia
If you are living alone and have dementia you may want to have a look at a helpful booklet from Alzheimer’s Society that outlines some of the help and support that is available to you. This includes tips on staying healthy and active and practical advice on doing everyday tasks. The booklet is free to download or order from the Alzheimer’s Society website.
Extra support to stay living independently
Services and adaptations
In the early stages of dementia, many people are able to manage daily living in the same way as before their diagnosis. As the condition progresses you may need some extra help with daily activities.
Your home can be adapted to help you to stay safe, mobile and independent. You can find practical advice in the Equipment and Housing pages of this website.
The NHS website also has useful information about aids and equipment, including available funding.
Assistive technology
Assistive technology refers to devices or systems that can support you to maintain or improve your independence, safety and wellbeing. The Alzheimer's Society website includes information about assistive technology and dementia.
Technology enabled care can stop a minor event turning into a crisis, by raising an alarm for a timely, appropriate response. Information on technology enabled care can be found on the equipment page.
Care and support at home
As the dementia progresses you may find that you need some additional care and support at home, to help you manage with daily living, including your personal care.
Longer-term care
You may reach the stage where your dementia means that, even with additional support, you are starting to find daily life difficult to manage in your home.
When this happens, you should speak with your GP or dementia adviser to consider the next steps.
Options may include live-in care, moving to a new home, more suitable for your needs or a residential or nursing care home.
Advance planning can help to ensure that you receive the long-term care you want. Planning ahead can also help to ensure that you can manage your finances so that you can continue to pay for the care you choose for as long as you need it.
The Carewise care funding advice website explains how you can access expert, impartial advice that helps you and your family to make informed decisions about paying for care.
Learning more about dementia
The dementia learning, development and resources pathway provides a range of E-Learning modules, webinars and virtual reality experiences that can support you enable a person to live well with dementia. It is for volunteers, staff, carers and families, of those living with dementia. Much of the online training and learning is free to access but you will need to submit a New User Request to be able to access it.