There are 800,000 people in the UK with dementia. Dementia is the progressive decline of the brain and there are different types depending on how and which part of the brain is affected. The number of people with dementia is increasing because people are living longer where the condition affects people from around the age of 65 years old. Dementia does not always mean a memory issue as most people think.
What is Dementia?
Dementia can affect someone in different ways:
Some people will become less empathetic and others start to hallucinate. Planning, decision-making, concentrating all get more difficult. Depression starts as does personality change, mood swings and confusion. People with dementia can also be apathetic, uninterested and display less control over their emotions. Social situations can be more challenging e.g. if there are too many people visiting, or because this changes their routine, then they can become easily agitated.
Support and Advice Available
Social services can assess to find out what help and support is available from the local authority’s social services department such as healthcare and equipment and care services. It then depends upon the income and savings of the person with dementia as to what solutions might be funded by the social services.
However, the NHS help for dementia is largely free and includes the treatment you receive from your GP and hospital. This can also include community mental health nurses, physiotherapy, audiology (hearing care), optometry (eye tests), podiatry (foot care), speech and language therapy, and mobility specialists.
Dementia charities like Dementia Age UK and Alzheimer’s Society provide support such as help at home, information, advice and activities such as ‘Singing for the brain’. In some areas, there are ‘Admiral Nurses’ who are specialist nurses that visit to give practical guidance and emotional support. Independent Age will provide regular phone calls or visits.
There are social media forums for advice, to share information, join in discussions and feel supported such as: Talking Point (Alzheimer’s Society forum), Carers trust forum, Carers UK forum and myALZteam etc.
Dementia not only affects the individual with dementia but it can devastate their family. ‘The Carers Trust’ supports the carer with financial advice, how to get a break, tips, transport, rights and learning opportunities, sitting services, befriending services. ‘The Skills Network’ provide technology-enabled training and skills solution in Dementia. In some areas ‘Crossroads Care’ provide a rapid response service for all Carers, designed to support them and their families at a time of emergency or crisis. All over England there are different groups and organisations that have evolved. As there are so many organisations, it is difficult to know who to approach or where to find what is most appropriate for the individual’s needs. Independent Living Advisers help to find the best options in your area and for the dementia patient.
Most people can remain independent with dementia for some time but will need more and more support as the disease progresses. In the early stages of dementia many people can live in their homes comfortably but as the disease gets worse they may need help with daily activities such as housework, shopping, and caring for themselves. Things like meal preparation and washing become harder. A paid carer can go to the house to help with practical tasks depending upon each persons needs; and can be introduced progressively as the needs become greater. Initial visits may just be social visits (chat and tea or an outing such as a drive out) so that a rapport and acceptance can be built. Then more help can be introduced such as cleaning, cooking, shopping and personal care. Other things can be introduced such as a laundry service, library service and Meals on Wheels.
It is better to introduce early support to help the person with dementia, to help them become accustomed to the people helping them, and to take advice as the dementia sets in.
Some people drive for some time with dementia, but to continue to drive it is obligatory to inform the Driver and Vehicle Licensing Agency (DVLA) of the diagnosis. The DVLA will ask for medical reports and may ask for a driving assessments – as they must be able to drive safely.
If there is no family, or if the family live too far away, then Independent Living Advisers will source, coordinate and monitor the services required to enable the person with dementia to stay in their home.
Some people develop mobility problems and they may benefit from mobility aids and advise. Sense of balance and ability to react quickly can be affected along with memory and judgement issues. Often distinguishing day from night can be a problem so there are special clocks clearly marked with day and night, or other daily living aids include: white boards to write lists or reminders; and pill-organisers. Some people may stop recognising food or struggle to use cutlery or find it hard to chew. There are special utensils to help people to eat and drink. Other devices include: ‘Telecare’ sensors and detectors that automatically send a signal to a carer or monitoring centre for example if the person with dementia falls. There are many practical aids available on the market and it is knowing what is most suited to the person’s needs. In some areas of the country the Alzheimer’s society have projects running to support people with dementia using technologies in their home. Independent Living advisers have a database on practical aids and can advise and work with the family to put the chosen aids in use.
A healthy lifestyle, eating well, staying in contact with people and exercising are important and are the best ways to slow the progression of dementia. Local groups for people with dementia such as dementia cafés are good ways of maintaining social interaction. Memory cafés are run by trained volunteers with the support of health professionals and offer an informal setting for people who are affected by memory problems and their carers to get support and advice. Singing groups offer people with dementia and their carers a chance to sing and socialise with other people in the same situation.
Activities to help maintain a good lifestyle can include: gardening, baking, doing puzzles and more. There are also ideas for remembering the past in a happy way, such as visiting a favourite place or putting together a memory box. Bright colours, interesting sounds and tactile objects can all catch attention in a way that other activities may no longer do: such as making conversation or reading.
‘Dementia Adventure’ offers outings and short breaks, such as barge sailing and woodland walks, designed for people living with dementia and their carers to enjoy together.
As dementia progresses the need for more support becomes more apparent. Going to appointments (e.g. vital doctors appointments) can be tricky as there will be an issue with remembering and travelling to it. If a taxi is required then someone may need to be there to accompany or even just to remind the person with dementia where they are going. A paid carer can be employed to accompany the person with dementia out. But the person would need to trust the carer. More and more people in the community are educated on how to help people with dementia thankfully with many events run by ‘Dementia Friends’.
The Author: Cecilia Trueman, Independent Living Advisers (www.ILA.life)
Cecilia is part of a team who saw a poorly met societal need to help our aging population stay in their own homes longer and to provide support for them to do this and to carry on with daily tasks as long as possible, and hence Independent Living Advisers was born in late 2015 to support people in these situations.
Independent Living Advisers (or ILA) provides support for people and relatives to help them to carry on ‘living life’ as normally as possible for as long as possible and to do so in our own home. ILA finds the services needed from healthcare professionals such as nurses, occupational therapists and physiotherapists who assess the needs of the elder and discuss and agree on the support required to help them live safely and comfortably. We use an eight-tier assessment framework, to evaluate everything that is needed to stay independent in the home depending on an individual’s unique needs.
We assign a healthcare professional to source the support needed, sets it up, monitor it, and act as a point of contact for all service providers. For elderly people with family, it allows them to enjoy precious time with their relative rather than trying to find time to investigate the local providers, evaluate different suppliers, and then understand the legal requirements and constraints etc. For those elders without family, then ILA provides end-to-end support that they can trust to help them live independently for as long as it is possible.
ILA is a paid-for service, that co-ordinates all other services whether they are public services, charitable solutions or paid for.