This information is designed to summarise some of the common issues faced by those who have dementia, their Carers and loved ones. It contains links to more in depth resources on particular topics as well as specialist organisations.

What is dementia?

Dementia is a term that describes a set of symptoms that include problems with memory, understanding and behaviour. There are several types of dementia; similarly to how there are different types of cancer. The most common types are Alzheimer’s disease which involves the connections between brain cells and Vascular Dementia which is a result of a stroke or several small strokes. There are other types of dementia and some people can have a mixture of varying types.

The Alzheimer’s Society is an excellent resource for information on all types dementia, not just Alzheimer’s. They have dozens of useful factsheets on various topics, from ‘What is Vascular Dementia?’ to ‘Explaining dementia to children and young people’.

For a full list of factsheets and to download the ones relevant to you please click here

The Alzheimer’s Society also produce ‘The Dementia Guide’ which is aimed specifically at those with a recent dementia diagnosis and their families. You can request a copy to be sent out by calling 0300 303 5933 or you can download a copy by clicking here

Further information on topics that you may find useful can be found by clicking on this button

Read more

After a diagnosis

Having concerns about your memory or that of a loved one is a worrying time and having it confirmed by a diagnosis of dementia, equally so. Ourselves and the Alzheimer’s Society can provide someone to talk to about how you feel but many people will also have practical questions. These may not be questions that you think of immediately and they could be worries about the future. The Guide and factsheets mentioned above may answer these questions but some of the more common practical issues are detailed below.

Managing your affairs

Not being able to make decisions about your finances is an understandable worry and may result in new responsibilities for your loved ones. If possible it is better to put plans into place as early as you can and discuss them with those you may want to act in your interests.

Relatively simple options include arranging third party mandates with your bank if there is someone you want to be able to manage that particular account. If you are married or have a partner, you may want to consider having joint accounts if you would want them to have access to the account.

Beyond this, granting Lasting Power of Attorney (LPA)  will enable your chosen Attorney(s) to manage your affairs if you are unable to do so yourself. There are two types of LPA ‘Property & Affairs’ and ‘Health & Welfare’. To set up an LPA, the person in question must have ‘mental capacity’, this is a term which refers to someone’s ability to make a decision and understand the consequences of it.

More information about Lasting Power of Attorney and forms can be found here and it is governed by the Office of the Public Guardian. The first step is to complete the forms which need to be signed by the person in question. To ensure that their best interests are at the heart of the process a certificate is also signed by a professional or someone who knows you (but isn’t the attorney).

For the LPA to be valid it has to be registered with the office of the Public Guardian. If mental capacity is lost but the form was previously signed, the attorney can still register it but there would be a delay until it could be used.

As well as the Alzheimer’s Society, Age UK also produce a useful factsheet on LPA which can be found here

Unfortunately if someone has lost mental capacity, then they are unable to consent to making someone their attorney. Instead, an application has to be made to The Court of Protection for someone to be made a ‘Deputy’. Deputyship can be a more time consuming and costly process than LPA and as it occurs after mental capacity is lost, the person with dementia is unable to say how they want their affairs managed.

For more information on Deputyship and forms, click here

A solicitor can assist with LPA or deputyship but this is not mandatory. Some families complete the paperwork themselves whilst your local Citizens Advice Bureau can also advise. If you need further information or help on this issue, please contact us.

Benefits

We can signpost you to your local benefits advisors for in depth advice but there are several common benefits which are detailed below:

Attendance Allowance (AA) is for people over 65 who have a long term disability or illness. Forms and guidance can be found here

Personal Independence Payment (PIP) has now replaced Disability Living Allowance (DLA) for adults under 65 with a long term disability or illness. Unlike AA it also has a Mobility Component which can either be paid as cash or as a vehicle via the Motability scheme. Forms and guidance can be found here

Carers Allowance is paid to those providing unpaid care to someone with on of the above benefits. The Carer must be providing more that 35 hours a week of care and earing less than £102 a week (after taxes, care costs while you’re at work and 50% of what you pay into your pension). Forms and guidance can be found here

With Carers Allowance the Government class pension as income, generally ruling pensioners out of actually being paid it. Despite this a retired Carer can still apply and be awarded an ‘underlying entitlement’. Although this has no direct financial benefit, in some cases it can result in them being eligible for Pension Credit or having a small premium added to their existed claim.

Pension Credit essentially sets a minimum income for people of retirement age and there are different levels for couples and those who are living alone. If one half of a couple moves into a care home permanently, then each person can claim as a single person. If their income is below this, then it is topped-up to the set level. It can also be a way in to other means tested benefits such as help with Council Tax. For more information on Pension Credit click here

If someone has a ‘severe mental impairment’ then they can be disregarded for Council Tax purposes. This means that if a couple are living together and one is disregarded, then the other person is eligible for the 25% single person discount. For more information, contact your local borough council.

Blue Badges for disabled parking are available via Northamptonshire County Council

Residential care

Not everyone with dementia will need residential or nursing care but some do. This is always a very difficult decision for families to take so if you simply need to talk, please contact us.

Once the decision has been made though, there are several practical issues to be dealt with. The Alzheimer’s Society provides information on selecting a care home and guidance on what to look for when viewing a home. This information can be found here

Northamptonshire County Council list all the care homes in the county (as well as other care services) in their Care Directory which can be found here  In addition the Care Quality Commission also list and inspect care homes and care services nationally. They can be found here

Funding for Care Homes can be a worrying issue with fears over homes having to be sold.  Your home will not be counted as capital if your spouse or partner is still living there. You may want additional independent financial advice but as well as the practicalities, it is usually a very emotional issue. If you need to talk, please contact us.

Incontinence


Some people with dementia do develop problems with incontinence which is an understandably sensitive subject and a practical issue for all involved. Support is available though the Northamptonshire Continence Advisory Service (NCAS) who assess, treat and manage bladder and bowel incontinence as well as provide appropriate incontinence products.

They can be called on 01604 678162 and those who are physically unable to get to one of their clinics can contact their District Nurse.