Get a Needs Assessment
Getting a care needs assessment when you’ve been diagnosed with dementia is vital, so that you know what help you’re entitled to. This will be carried out by the local authority and is to determine what your needs are, and whether they are prepared to help meet the costs of those needs. Your local authority has an obligation to carry out a needs assessment, regardless of what the outcome may be, as even if you must pay for your own care and support it will be helpful to know the results of the assessment. For instance, if you decide to approach a private home care provider such as Helping Hands for your support, we will be able to build your package of dementia care around the results of your care needs assessment, in conjunction with how you want your daily routine to progress.
What Support is Available?
While it can be difficult to know where to turn once you have a formal diagnosis of dementia, there are charities and organisations who will be able to advise you on how to live well, moving forward. If you are feeling overwhelmed with the amount of information that you are coming across it can be helpful to have another chat about your options with the GP or specialist you have been working with, or if you are having additional feelings of anxiety post-diagnosis. Otherwise, helplines and local drop-in sessions can be accessed in many areas of the UK, and it is worth speaking to some of these organisations to discover where more help is available.
Charities for People with Dementia
There are many charitable organisations in the UK dedicated to helping people live as well as possible with dementia, as well as raising awareness, and doing vital research. The Alzheimer’s Society is one of the UK’s most visible charities, with it’s forget-me-not emblem and regular fundraising campaigns. They have an extremely detailed website, with areas for people living with dementia, their carers, and healthcare professionals to access, as well as a shop selling dementia-friendly products, and a helpline that’s available seven days a week on 0333 150 3456.
Dementia UK are a specialist dementia charity, perhaps best known for their outstanding Admiral nurses, who support people living with dementia throughout the UK. They also have a wealth of information online and a dedicated helpline open seven days a week, on 0800 888 6678.
Alzheimer’s Research UK are a research organisation who are working tirelessly to revolutionise the way dementia is diagnosed, treated, and prevented. They have a highly informative website, full of information and ways to raise money for further research. They also have a dedicated Dementia Research Info line open Monday-Friday, where people can have their dementia questions answered and get involved in research studies. The number is 0300 111 5111.
Social Media for People with Dementia
As well as the helpful and informative charity websites above, there is a wealth of information available online around dementia, its diagnosis, and how to live well. It’s important to only visit trustworthy, reliable sites to garner accurate information though, and starting with the charities listed above will ensure you get signposted to social media accounts that you can trust. Social media can be a useful tool for people living with dementia as it can keep them in touch with family members and loved ones who may not be living close by, helping to prevent loneliness and isolation as much as possible. There are also tablet devices and mobile phones that are especially designed to be straightforward to use, keeping some people living with dementia online as their condition progresses. This means that they will have a vital network of people available who understand their condition and can offer advice and support. The Alzheimer’s Society for example, has accounts on YouTube, Facebook, Instagram, and more, meaning that authoritative material and information is on hand via a variety of methods.
Dementia Friends is an Alzheimer’s Society initiative that “aims to transform the way the nation thinks, acts and talks about the condition.” By attending a local information session, people can become a dementia friend and help to raise awareness of the condition, especially on a local level. By wearing a dementia friend badge, other people will instantly be able to see that someone understands how to support others to live well with dementia, giving a vital link to people who may be struggling with the condition themselves, or supporting a loved one. Their Facebook and other social media accounts contain a lot of support and advice and can help people who are feeling isolated to know there are others who understand.
Memory cafes are places where any one with memory loss (whether formerly diagnosed or not) and their carer or family may find support and a friendly welcome. Over tea and cake, it can be a place of comfort where people who need a break from the regular routine can socialise and gain support in a safe and caring environment. There will usually be the opportunity to be signposted to more formal help, if necessary, from people who understand dementia and are experienced in a personal and/or professional capacity. Cafes may be run independently, by small local community groups for just a few people, or they may be delivered by large organisations who provide paid staff or volunteers, such as the Alzheimer’s Society. Regardless of the size, memory cafes are a vital place to socialise for people living with dementia, where activities such as singing for the brain or creative crafts will be provided for attendees and their carers.
What Care Options are Available?
When you’ve been diagnosed with dementia, thoughts inevitably turn to the future and what provision will need to be in place to support you as your condition progresses. Many people presume they’ll have to eventually leave their beloved home and end up living in residential accommodation, however this isn’t necessarily the case. If you are paying for your own care or receiving ‘top-ups’ then you’ll probably have more choice about who delivers your provision and where you have it delivered, which isn’t always open to people who are being wholly funded by the local authority, or NHS.
If you’ll be paying for your own care, either partly or wholly, then choosing a home care company who have extensive experience of supporting people living with dementia is essential. Helping Hands have been established since 1989 and throughout our history we have supported thousands of people living with various types of dementia, including Alzheimer’s, vascular, Lewy Body, fronto-temporal, and many rarer kinds. There are over 100 different conditions that can cause the cognitive decline associated with dementia and knowing that your carers have so much experience available to them, from a company with such a strong pedigree, is just another reassurance for you and your loved ones. We offer care on both a visiting and live-in basis, longer-term or temporary, and we would be happy to chat to you and your supporters about your options, at a time convenient for you.
Managing Financial and Legal Requirements
It’s important for everyone to have their financial status in order as they age, regardless of whether they are diagnosed with dementia, as the reality is that anyone could require care at some stage in their life. However, after a diagnosis of dementia has been made it’s even more important to have legal and financial matters secured, and appropriate measures in place, so that the person can be sure their wishes and needs will always be respected.
Having a will is sensible for everyone, as it ensures that money and assets end up going to the person you wish them to after you’ve passed, rather than legal wrangles taking place that can drain resources and cause undue suffering. According to the NHS, “A person with dementia can still make or change a will, provided you can show that you understand its effect. Unless your will is very simple, it’s advisable to consult a solicitor who specialises in writing wills.” Many charities will often offer free will-writing services in exchange for a legacy to that charity, but it’s always beneficial to seek independent advice as well when you’re planning to write your will, to make sure it’s the right decision for you.
There are different sources of benefits available to people who are living with dementia, depending on a person’s age, financial status, and other considerations. For instance, if someone is diagnosed and still of working age there are benefits such as Universal Credit, and Employment and Support Allowance (ESA) that they may be eligible for. Disability benefits such as Attendance allowance (AA), Personal independence payment (PIP) and Disability living allowance (DLA) may be relevant to other people, as well as help with paying bills for those on a low income. Contacting Citizen’s Advice or Age UK will give you, your carers, and loved ones helpful advice about how to gain the information you need.
Lasting power of attorney
According to the Alzheimer’s Society, “A Lasting power of attorney (LPA) is a legal tool that lets you choose someone you trust to make decisions for you. LPAs can make things easier for you and the people you are close to as your dementia progresses.”
As dementia progresses it can mean that a person may no longer be able to make some decisions for themself. This is known as ‘lacking mental capacity’. If this happens, a trusted individual should be nominated who can make important decisions on that person’s behalf, someone who can act in their best interest, and ensure their wishes are always carried out. This can be a carer or family member but doesn’t have to be, and it doesn’t have to be one person either, several people can be nominated as ‘attorneys’ (not to be confused with solicitors or lawyers). In the context of an LPA, ‘attorney’ does not have to mean someone who has legal training, or any knowledge of the law. There are two different types of LPA that can be completed, one for financial and property decisions, and another for health and welfare. You can choose the LPA that suits you and it’s a good idea to have everything in place before your condition progresses too far, as you will need to have mental capacity to set up an LPA. To find out more, apply online, or download the forms, you should access the government website.
It’s vital to tell the DVLA (Driver and Vehicle Licensing Agency) straight away after a diagnosis of dementia, otherwise there are stiff penalties to face. The Alzheimer’s Society tells us that “A driver (or ‘licence holder’) who is diagnosed with dementia must tell their licensing agency straightaway. If they don’t, they can be fined up to £1,000.”
While it can be upsetting to feel you won’t be able to drive anymore, not declaring a medical condition will put other road users, and yourself, in danger. It will also likely invalidate your insurance policy and can lead to having your licence taken away. By notifying the DVLA immediately it doesn’t mean you’ll have your license removed and lose your independence, it just means that the agency will wish to ask you further questions about your health and decide whether you are still safe to drive. Your doctor should advise you post-diagnosis about notifying the DVLA and will encourage you to do so voluntarily. If the doctor has any reason to think you have not done this, they will be obliged to notify the DVLA for you which could lead to penalties and an immediate ban on driving. However, if you tell them about your condition yourself, you may still be able to continue driving for the near future, depending on your personal circumstances.
Having a Helping Hands carer coming to your home on either a visiting care or live-in care basis means you’ll remain as independent as possible in the home you love, even if you have to give up driving. In most circumstances, they will be able to drive you to places so that you don’t become isolated at home, meaning you still get to enjoy travelling by car. To discover more about dementia care at home you can chat to our friendly customer care team, seven days a week.