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What is dementia?

Dementia is a term used when an individual’s cognitive abilities (such as memory, thinking & problem-solving skills) gradually deteriorate over time. These changes are over and above the mild changes which are sometimes seen in the course of normal aging. There are a number of different conditions which can cause dementia. At present there is no cure for dementia, but it is very possible to live well with dementia.

The word ‘dementia’ is an umbrella term, which can refer to a vast range of symptoms associated with living with dementia, including some of the following:

Memory;

  • Forget recent conversations or events;
  • Lose or misplace items around the house;
  • Forget appointments or anniversaries;
  • Difficulty remembering words and names;
  • Forget to take medication (or forget that they have taken it);
  • Forget PINs and passwords.

Thinking;

  • May become slowed or muddled;
  • Understanding, together with planning and problem-solving skills may be reduced;
  • Organisational abilities may therefore be impaired;
  • People may also experience difficulties manipulating numbers, handling money and understanding the value of money.

Visuospatial;

  • Difficulty recognising people, things and places – they may get lost or disorientated or may misidentify people and things;
  • Impaired spatial awareness, resulting in clumsiness, falls and accidents;
  • Difficulty making sense of scenes, images and the written word;
  • Misperceptions and hallucinations.

Personality and Behaviour;

  • May lose motivation, spontaneity, the ability to initiate activities;
  • Struggle with self-regulation;
  • Experience a lack of empathy;
  • Experience out of character behaviour.

In some cases, dementia may also cause;

  • Anxiety & depression;
  • Hostility, suspiciousness & confabulation;
  • Delusions;
  • Restlessness, wandering & sleep disturbance;
  • Aggression & agitation;

The Biggest Risk Factor for dementia is Age

  • The older you are, the more likely you are to develop dementia. 
  • About two in 100 people aged between 65 to 69 have dementia. 
  • About one in five people between 85 to 89 have dementia. 

BUT just over 5% of people with dementia – around 42,000 people in the UK – are under the age of 65

Reducing the risk of dementia

Some ways in which you can modify your behaviour and decrease your risk of dementia are:

Do not smoke

Keep active and exercise regularly

Maintain a healthy weight

Keep Socially active

Keep mentally active

Eat a healthy, balanced diet

Only drink alcohol within NHS guidelines

Keep cholesterol and blood pressure at a healthy level

Dementia and younger people:

Young Dementia UK explain that dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia. However, this is an arbitrary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age. 

Dementias that affect younger people can be rare and difficult to recognise. People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.

The Social Care Institute of Excellence (SCIE) recognises that when someone is diagnosed with dementia it affects the whole family, not just the individual. A younger person may have a spouse who still works, children who live at home, grandchildren, siblings, nieces and nephews who care but don’t understand what is wrong. Each member of the person’s family will have different questions and a particular role to play, and their own view about how best to help. The kind of information and support that is required will depend on the age of the family member and their relationship to the person diagnosed. For example, the person’s spouse will probably want to know what to expect and how best to cope. They may want to meet with other people in a similar position for support.

There are local and national charities specifically set up to offer specialist support people living with, or affected by, young onset dementia, including:

YPWD (Berkshire):
http://www.ypwd.info

Resources for Children

 

The Social Care Institute of Excellence (SCIE) suggests that younger family members (e.g. children or grandchildren) might appreciate a book called ‘It’s Me Grandma! It’s Me’ by Eileen Mitchell, which explains what dementia is in terms that a 7 to 11-year-old can understand.

The Mental Health Foundation have also reissued a new version of ‘The Milk’s in the Oven’, which can be downloaded for free on their website.  ‘The Milk’s in the Oven’ is a revised and updated version of the booklet originally written by Lizi Hann in 1998. It explains how people with dementia might behave and feel, and provides young people with information about the illness and how to cope if someone they know has dementia.  There are a number of exercises in the booklet which make it ideal for use in the classroom, as part of a PSHEC lesson.

Dementia Friends sessions can also be arranged for groups of children and young people and specific resources have been developed by The Alzheimer’s Society for the sessions.

Respite Care

The NHS outlines the support available for carers to be able to take a break from caring on their website.  It also gives an overview of the costs of respite care.  You can read their advice here.

Advice specific to West Berkshire can be found here where you can download their Information for Carers booklet

Choosing a care home

Making the decision to consider residential or nursing care for yourself or a loved one can be difficult. One of the most important things to check when choosing a care home is the most recent Care Quality Commission (CQC) report.

It is a good idea to visit a number of care homes if possible to see which one is the best fit for you and your loved ones. Take time to look around and talk to staff and residents as well as the manager. It can be helpful to have a check list of things to consider before your visit such as:

 

Location

 You may already know of a care home through personal recommendation or from social services:

  • Is the care home near family and friends? 
  • Are there good transport links? 
  • Are there shops, leisure facilities and cafes nearby?

Facilities

It is a good idea to ask to see a couple of bedrooms, as long as current residents are happy with this:

  • Can residents have their own room, with space for their own furniture and possessions? 
  • Are there enough toilets within easy reach of bedrooms and living space? 
  • Is there a garden where residents can walk safely? 
  • Are chairs arranged in groups in living areas to encourage socialising, rather than round the edge of the room? 
  • Will the home meet specific religious, ethnic or cultural needs? 
  • Are residents’ food likes and dislikes catered for?

The Staff

Check if the manager of the home arranges a care assessment of potential residents to make sure it can meet their needs:

  • Are all the staff trained in dementia care? 
  • Do staff seem interested and caring? 
  • Is there a full-time activity co-ordinator specialising in dementia-friendly activities? 
  • Do the staff hold regular relatives meetings? 
  • Is the home accredited under the Gold Standards Framework for end of life care?

The Residents

A good sign of a well-run care home is residents who appear happy and responsive:

  • Are residents treated with dignity and respect by staff? 
  • Can they have visitors whenever they want? 
  • Are there regular residents’ meetings? 
  • Have they got access to community health services, such as chiropodists and opticians? 
  • Can you continue to help care for your relative in some way, perhaps helping them with an activity?
  •  

Credit for this section: NHS Dementia and Care Homes and Alzheimer’s Society Care Homes Checklist

Private Care Homes in West Berkshire

Winchcome Place

Winchcombe Place care home in Newbury is a modern, purpose-built home that delivers round-the-clock care for older people. The team will support you and your loved one through your journey into care and can offer virtual show-rounds with a dedicated member of the team. 

Winchcombe Place provides a full range of care services for older people, including residential, nursing, short-term respite care and sensitive end of life care. 

Care UK believe that living in a care home should be just as good as living in your own home – or better. Winchcombe Place has a hair and beauty salon, coffee shop and cinema along with a library, vintage-themed lounge and an arts and crafts room, so residents can continue to enjoy the very best lifestyle.

Winchcombe Place has 80 bedrooms. Each room has en-suite facilities and a different colour scheme and outlook. Our ground floor bedrooms even open directly onto our lovely secure gardens. Every room has its own flat-screen TV, phone and internet connections, adjustable profile bed and 24-hour nurse call system. Your loved one is welcome to bring their own possessions to help personalise their space. 

Winchcombe place also deliver an ‘Advanced Dementia’ course online via zoom that can be booked on their website.  This course gives an insight into brain and body changes, Communication, Sensitivity and the environment, Behaviour & End of life.

Find out more information about Winchcombe Place here. 

Falkland Grange

Falkland Grange Care Home is a place to live well, offering 24 hour dementia, residential, nursing and respite care for a range of health needs on a long or short term basis.

Opened in 2019, residents are supported by a highly trained, hand-picked team who understand the importance of providing person-centred care and promoting dignity and respect at all times.

In 2020, Falkland Grange was a proud recipient of the ‘Best Specialist Dementia Design’ award at the Pinders Healthcare Design Awards, which recognised the quality of the environment our residents live in. Every resident has a private bedroom with an ensuite wet room whilst there is also a cinema, a café, communal lounges, a hair salon and a private dining room for special family occasions.

A daily changing menu means our residents can look forward to fresh, nutritional dishes at every mealtime whilst a diverse activity programme ensures there is a pastime to suit every need and interest.

Call 01635 926900 today to speak to a member of our knowledgeable and friendly team.

 

Thatcham Court

Thatcham Court is a specialist dementia home offering high quality care.

We believe in putting the person before their condition and offer truly personalised residential and nursing care for those living with all stages of dementia. We understand that the dementia journey is tough on families too, so we offer lots of support.

Find out more about Thatcham Court care home.

Gracewell of Newbury

Gracewell of Newbury is a luxury care home in Newbury, situated just a short walk from West Berkshire Community Hospital. This home benefits from a stunning landscaped sensory garden and premium amenities, a salon, cinema room, pub and a coffee shop.

Gracewell of Newbury provide nursing, dementia and residential care, with excellent rail and road connections ensuring your loved ones are always connected. 

The home has recently installed safe visiting facilities, this allows friends and families to stay connected face-to-face with their loved one.

Find out more about Gracewell of Newbury.

Please click to access a helpful video made by one of our Dementia Friendly West Berkshire member organisations about paying for care

Play Video

West Berkshire Council Care Home Offer

West Berkshire council run 3 care homes that are suitable for people living with dementia.  These are;

  • Willows Edge in Newbury
  • Birchwood in Newbury
  • Notrees Care Home, Kintbury

Access more information and the CQC reports these homes here.

Read about the dementia friendly adaptations that have been made to Birchwood Care Home here;

https://info.westberks.gov.uk/Birchwood_WalnutWing

 

Alternatives to Care homes

Accepting the need for some care and support

Many elderly people are very reluctant to complain or to admit that they are finding life difficult: they resign themselves to struggling on, often to the further detriment of their health and well-being. But help and support is available, and it is important to act before a crisis hits so that they can stay as independent as possible and keep control over decisions about where and how they live.    

Are you living in the right place?

The most important thing to remember is that your physical environment can have a dramatic effect on both your physical and mental health and well-being.  Living in the right place with the right support can allow people to retain their independence and enable them stay in their own home for as long as they live.  That might mean taking the big decision to move to somewhere more manageable before health deteriorates or a crisis occurs.   

Finding out what care options are available to you

Just because someone is finding it difficult to manage where they are living now doesn’t mean that the only option is being “put into care” - but many elderly people fear that this is the case and so they won’t admit that they are struggling.    

Care at Home

Most people say they would prefer to be cared for in their own home and there are some excellent domiciliary care companies who provide home visits.  It is important to find a care company who provides person-centred rather than task-based care and who provides companionship alongside care.  Fifteen-minute care visits should be a thing of the past!  Live-in care is also an option and can be very cost-effective particularly if a couple need some care and support.  If you are having care at home, you should have a written care plan which is reviewed regularly.  Good care at home will liaise with your GP and, if needed, with district palliative care teams so that you can stay at home for the rest of your life.  

Residential Care

Care and Nursing Homes, despite often very negative and worrying media coverage, are far from the Dickensian Workhouses that many fear.  The right Care or Nursing home can provide wonderful care, with fantastic food - and the ability to mix whenever one chooses with other people can alleviate the desperate loneliness and isolation many elderly people suffer living alone in their own home.   The outbreak of Covid-19 has brought residential care into sharp focus and is important to check if your care or nursing home will require you to stay in isolation for a quarantine period.  This might affect how well you, or someone living with dementia, can cope.  

Whatever care option you choose it is important to do your research BEFORE a crisis hits.  This means that you will be able to make informed decisions in tranquillity and reduce the risks which may lead to a crisis. 

Thanks to Alison Hesketh at Timefinders who has written this section of the website.  If you would like further help or advice about alternatives to care homes please follow the link to the Timefinders website here https://timefindersuk.com/

Funding Advice

The costs of providing the best possible support and care for those living with dementia and their families be expensive. Help is available and helpful information can be found on The Alzheimer’s Society website in relation to paying for dementia care. This can be found here.

Benefits

The Alzheimer’s Society has very detailed information on what benefits may be available to people living with dementia and how to claim these, which again can be found on their website.

Legal Advice

The advice in this section has been pulled together by Dementia Friendly West Berkshire member Gardner Leader.

 

Niamh Minihane

Solicitor

Lucy Butcher

Solicitor

Whether you are considering making your own Will, need advice on assisting a relative in making one, or are currently handling the estate administration of a loved one, the legal considerations and processes involved can be complex and daunting. The Solicitors at Gardner Leader will assist and guide you every step of the way, delivering you peace of mind throughout.

Gardner Leader

Fact Sheets

Wills

Lasting power of Attorneys

Court of Protection and Deputyships

Mental Capacity Assessments

Advocacy

Content TBC

 

Driving after a diagnosis of dementia:

For most people, driving is an important part of their life as it provides much needed independence. Many people are therefore fearful that a diagnosis of dementia will mean that they will lose their licence. However, a diagnosis of dementia does not mean that an individual must stop driving. The important consideration is whether or not that individual can continue to drive safely. Nevertheless, if an individual is diagnosed with dementia, they are required to inform the DVLA of their diagnosis. If they do not personally inform the DVLA then their doctor is responsible for doing so.