Dementia – pre-diagnosis support in Buckinghamshire
Becoming forgetful does not necessarily mean that you have dementia. Memory loss can be an effect of ageing. It can also be a symptom of stress, an infection or depression. In rare cases, dementia-like symptoms can be caused by vitamin deficiencies and other conditions so is important to seek advice from your GP.
If you have concerns about your memory, please contact the Memory Support Service or your GP surgery.
The Memory Support Service will complete a memory screening in your own home at a time convenient to you. Once the results have been explained to you, the worker will provide written feedback to the GP.
Your GP will then assess you to rule out other medical conditions affecting your memory and could then, if needed, refer you onto the Memory Clinic for further assessments and final diagnosis.
These assessments can include conversations, a physical examination, memory tests and/or brain scans.
Please take a look at our printable ‘My Life, My Memories’ information sheet – it contains key general and local information for people who may be experiencing memory problems (or know someone who is).
Why is a dementia diagnosis important?
Early diagnosis means someone with dementia can often live independently in their own home for longer. This avoids early or unnecessary hospital or care home admissions, and can improve quality of life.
- Symptoms are treated sooner – and early treatment can be more effective.
- Getting early help and advice lets people be more confident when planning for the future and arranging financial benefits and entitlements (for instance, disability living allowance and council tax reduction).
- People can get support sooner, from, for example, social services, day centres, respite care, community mental health teams, occupational therapists, carer support groups and the Alzheimer’s Society.
- Other conditions that may have similar symptoms to dementia, and that may be treatable, can be ruled out (including depression, chest and urinary infections, severe constipation, vitamin and thyroid deficiencies and brain tumours).
- Other possible causes of confusion, such as poor sight or hearing; emotional upsets or drug side-effects, can be ruled out.
- As more drugs for treating different conditions become available, it is important to identify which type of dementia a person has so they can receive the most appropriate medication for their situation.
The Memory Support Service can support people with a diagnosis of dementia and their carers who live in Buckinghamshire.
The advisors are members of a fully trained and dedicated team working in the community alongside GP surgeries and memory clinics, and will offer information, guidance and support.
The advisors can help in different ways, either by meeting with you in your own home, or via a telephone conversation. They will:
- Support you to do a Memory Screening Test
- Talk through any concerns
- Find out about benefits and other financial matters
- Provide information about memory issues and dementia care
- Be a listening ear and be available whenever you have a question or need more information
- Advice for carers to manage unpredictable behaviour of those with dementia
- Help you plan for the future
- Give you information about any service available to you.
Contact the Memory Support Service on 01296 331749 or email email@example.com
Click here for more information.
The Memory Support Service is run by Alzheimer’s Society on behalf of Buckinghamshire County Council and in partnership with NHS Aylesbury Vale and Chiltern Clinical Commissioning Groups [CCG].
Living Well with Dementia
Remember that you, as a person with dementia or as a carer for someone with dementia, are not alone. Dementia can affect the whole life of the person, as well as their family. There is advice and support available to help you to live well.
Again, the Memory Support Service can look at how best to meet your needs and maintain your quality of life in the coming years – call 01296 331749 or e mail firstname.lastname@example.org
It can also give details of dementia and memory concern information and support sessions that run regularly throughout the year.
You can also download, for free, the monthly Living with Dementia, from the Alzheimer’s Society website by clicking here. It contains information about advances in research as well as general issues relating to living well with dementia.
The Alzheimer’s Society also produces a range of publications and factsheets designed to support and inform anyone affected by dementia. The subjects include living with dementia and caring for someone with dementia, as well as a number of useful factsheets.
It also publishes The Dementia Guide – living well after diagnosis. This comprehensive guide includes sections on living alone, technology, coming to terms with a diagnosis, communicating and changes to relationships. Versions of this guide are available in different languages.
You can reach the Alzheimer’s Society national helpline on 0300 222 1122 .
Talking Point is an on line forum for people to share their experiences and gain support and can be accessed by clicking here.
Please note that the Alzheimer’s Society is for carers and people with all types of dementia, not only Alzheimer’s disease.
The NHS choices website provides lots of helpful information on things you can do to help you live well with dementia, which can be accessed here.
Other useful services you can access include the following:
Community Meals Service – Run by Apetito, this team of meals-on-wheels drivers works from a local service centre and delivers meals in specially designed vans with built-in ovens. Meals are cooked en route and dishes arrive piping hot and full of nutrition. Call 01225 562 549 for further information.
Age UK Buckinghamshire’s services can support people to live independently and lets families have peace of mind and be confident in their caring role. Services include: Befriending, hairdressing, handyperson, gardening, toenail cutting, benefits advice and general help in the home. Call 01296 431911 for details.
Carers Bucks provides information, guidance and support for carers. Call 0300 777 2722.
NRS Healthcare offers a range of products to improve people’s quality of life and independence, including daily living aids, mobility equipment, disability equipment and therapeutic resources.
For more details see the website – www.nrshealthcare.co.uk or call 0345 121 8111
Tips to help the person with dementia and the carers:
- Stay in touch – a visit, a card, a call means a lot
- Focus on what the person still can do
- Do the little things, like cooking a meal, bringing some shopping around
- Offer a listening ear, be there for the person with dementia and their carer
- Learn more about dementia by attending a course and/or read a book about dementia
- Help the person with dementia stay healthy and active, organise an outing
- Do something nice with the person with dementia and give the carer a short break
- Make a life story book together
End of Life Care
Dementia is a progressive condition for which there is currently no cure. All people who develop dementia will have dementia at the end of their lives, either as the condition they die from or as a factor which may complicate the care of a different condition.
Diminishing capacity means that it is important for the person with dementia to plan for the end of their life at an early stage. This can help ensure the person gets the treatment they want in a way that helps them to end their life with dignity in the place of their choosing.
For more information please see the NHS planning for the future.
Activities and things to do
Maintaining everyday skills is really important for people with dementia.
- The Dementia booklist is a collection of adult and children’s books which support people with dementia and their carers by raising awareness and increasing understanding of the condition. The Dementia book list can be found here as well other activities and events held at libraries around the county.
- The Reminiscence Collection – recalling and sharing memories is something most of us do whatever our age. For people with dementia, it can be especially enjoyable and helpful.
The collection includes a wide variety of ‘Memory Boxes’ containing games, puzzles, books and activities for individuals or groups is held at the County Reserve Store in the basement of County Hall in Aylesbury and is open to the public on Tuesdays from 9.30 to 5 pm and are also available to borrow. Call Stock Services on 01296 383966 for more information.
- Dementia Cafes offer the opportunity for people with dementia and their carers to meet informally for information and support. The cafes are run by the Alzheimer’s Society across the county. To find venues and times click here or call the local Alzheimer’s Society 01296 331722.
- Singing for the brain provides a stimulating and enjoyable activity for people with dementia and their carers. It is also run by the Alzheimer’s Society in several locations across the county. For South Bucks office call 01494 670 909 and for Aylesbury and Buckingham office call 01296 331 722.
- Bucks Mind Services for Older People – Park Club in Chesham, and Pippin Club in Prestwood. offer a variety of activities such as games, quizzes, orientation and reminiscence activities, crafts and physical activities. This service is currently funded by Buckinghamshire County Council, ( there is a small additional fee of £6.50 per day for lunch which is cooked on the premises). Please click here for a referral form.
- Home Library Service – This service is for Buckinghamshire residents, who are housebound and unable to visit a library due to age, illness or disability. Carers who are unpaid are also eligible. This service could benefit dementia clients by keeping their mind’s active. The Home Library Service is a free monthly service delivered to your home at a suitable time for you by volunteers. If you think you could be eligible please contact:
Click here for more information.
- Buckinghamshire Care – Provide day opportunities in many locations across the county for people living with dementia. For further information Email email@example.com or call 0333 121 0201.
Dementia Friendly Communities
People with dementia and memory impairments want to remain independent for as long as possible but they and their carers often talk about the everyday challenges they face trying to ‘live well’ with their condition. This can include difficulties in navigating around due to poor signage, remembering pin numbers in shops, banks and post offices, using public transport and maintaining social contact.
Dementia Friendly Communities aim to:
- Support local communities to work together and respond more positively towards those individuals living with dementia or memory impairments.
- Increase public awareness and understanding of dementia and memory impairments and how it affects a person’s ability to complete daily activities.
- Better support individuals living with dementia and memory impairments to continue accessing services, facilities and activities safely and confidently.
- Enable people living with dementia and memory impairments to remain independent for longer and have more choice and control over their lives.
- Encourage people with dementia and memory impairments and their carers to seek help and support.
We have launched Dementia-Friendly Communities in Stokenchurch, Great Missenden, Buckingham, Burnham, Denham, Iver, High Wycombe and Aylesbury. We encourage all communities in the county to become Dementia-Friendly.
To find out more about how you can get involved in your community becoming dementia friendly contact: 01296 387821 or email firstname.lastname@example.org
Prevention Matters is a free and friendly advice service linking eligible adults (over 18) in Buckinghamshire to social activities, volunteers and community services.
It is delivered by Buckinghamshire County Council in partnership with the NHS, District Councils and a variety of voluntary and community sector organisations.
How can Prevention Matters help?
Prevention Matters can support you in regaining your confidence, independence and getting out and about if you are:
- Struggling to remain independent in your own house
- Having difficulty getting out and about
- Feeling lonely and isolated
- Feeling anxious or lacking confidence
- Recovering from an illness
The service will help you find social activities, volunteers and community services in your area.
How do I use the service?
If you’re eligible you can refer yourself or you can refer someone you think would benefit from the service providing they are eligible. You can do this by:
- Calling us on local number 0300 666 0159
- Email at email@example.com
- Or use the online form below
- Alternatively you can ask your GP or health professional.
For more information on Prevention Matters, click here.
Caring for someone living with dementia
As a carer it’s important that you take the time to look after your own health and well-being. Unfortunately research shows that carers in a substantial caring role are more likely to suffer from health problems themselves, both mentally and physically.
For information and support for carers, please look at this page on our website.
NHS Health Education England produces The Dementia Guide for Carers and Care Providers . This aims to help carers to understand the progressive nature of dementia and the challenges a person caring for someone with dementia may experience.
If you are a child or young person/teenager looking for information about dementia, then this link may be worth a look:
The milk’s in the oven – a new online or print off booklet to help younger people understand dementia.
A range of support for young carers is available at http://www.youngcarersbucks.org/
Explaining to Children:
You may wonder how to explain about dementia to children. The Alzheimer’s Society factsheet is a useful resource: Factsheet: Explaining dementia to children and young people .
Hazlemere Young Onset Dementia Carers
Riversdale Carers, Jackson Court, Rose Avenue
10.30am – 12pm, second Tuesday of the month
Contact Carers Bucks
Changing Places For adults caring for a parent with dementia
Church End, Princes Risborough, Bledlow, Princes Risborough
7.30pm, first Wednesday of the month.
Contact Helen Robinson
Whiteleaf Support group – brings carers together to discuss the problems they encounter in the daily task of caring, and to give advice on all aspects of caring. Meetings take place on the last Thursday of each month at 6.00pm for refreshments and chat, meeting starts at 6.30pm in Hardings Restaurant, Aylesbury College, Oxford Road, Aylesbury. For further information Email: Sheila.firstname.lastname@example.org or call on 01296 422228
Alzheimer’s Society – support groups take place across the county for carers and people with dementia and memory concerns for further information Alzheimer’s Society on 01296 331722
Picks Disease Support Group – Caring for people with frontotemporal dementia is hard, there are few facilities tailored for the younger sufferer and those are not always appropriate for people with frontotemporal dementia. Also there are no specific treatments yet for frontotemporal dementia. All this adds to the distress, isolation and burden of caring. The PDSG tries to decrease the burden by providing information and support.
The Pick’s Disease Support Group includes:
- Dementia with Lewy Bodies
- Frontotemporal Dementia including:
Frontal Lobe Degeneration, Pick’s Disease and Primary Progressive Aphasia
- Alcohol Related Dementia
- Corticobasal Degeneration
Films on dementia
Films aimed at BME community
These two locally made films form part of ongoing work by NHS Buckinghamshire Clinical Commissioning Groups together with Buckinghamshire County Council, to reduce stigma of the condition and raise awareness within diverse communities.
One film, ‘Living Well With Memories‘, features clinical advice on prevention and management of dementia, including practical day-to-day tips and guidance on support available.
The other, entitled ‘My Life, My Memories’, focuses on the experiences of several people affected by dementia from different communities within the Buckinghamshire area. It offers a number of insights into the way cultural sensitivities can allow for more effective care for patients.
Both were made by Dr Mahuya Kanjilal of Bucks New University, who has extensive experience of making films highlighting health and social care issues as they impact the BME community. The project was also supported by NHS England South Central.
Young dementia UK’s new film
Eight people living with young onset dementia discuss support and the impact it has on their lives in Young Dementia UK’s new film. Click here to see the film and what types of support the people interviewed benefit from, what it enables them to do and why it’s #simplylifegiving.
Finding Patience- the later years
Developed with experts from across the system, Finding Patience – The Later Years is a film that explores what makes good person-centred dementia care in care homes. The film follows the experiences of Patience and her family as she moves to a care home. It explores the challenges faced by care home staff and demonstrates what good quality patient-centred care looks like. Click here to view it.
Useful contacts and links
- Buckinghamshire County Council Adult Social Care
Tel: 01296 383204
- Alzheimer’s Society Buckinghamshire
Tel: 01296 331722
- Carers Bucks
Tel: 0300 777 2722
- NHS Oxford Health NHS Foundation Trust
- Aylesbury & District Citizens Advice Bureau
Tel: 01296 329854
- Buckinghamshire Mind
- NRS – supplier of disability equipment, mobility aids and rehab supplies
Tel: 0345 123 8248
- Memory Support Service
Tel: 01296 331749
- Dementia Friendly Communities
Tel: 01296 387821
- Lindengate – Health and wellbeing through nature and horticulture
Tel: 01296 622443
The Dimensions organisation supports people with learning disabilities, autism, challenging behaviour and complex needs in various ways – including voting. Click here to download a ‘voting passport’. This sheet can be filled in and presented at the polling station to support you in voting.
Getting Informed – Website
York University has launched a website to help support older people and their relatives find information about social care in later life. The website contains a leaflet and short film and covers basic information about social care including what information different organisations can and cannot provide.