Questions and Answers

What are the symptoms of dementia?

Symptoms of dementia can include increased forgetfulness, losing items regularly, poor short-term memory, confusion, mood swings, problems with communicating, poor concentration, getting lost in seemingly familiar paces and repeating oneself frequently. We all forget a name or even a face once in a while and this is nothing to worry about. Dementia can be a combination of one or all of the above symptoms, which have been occurring for a period of time and are progressively getting worse.

I suspect my loved one has dementia. What should I do?

Memory problems or increased confusion can be caused by a number of things. If you suspect you or a person you know may have a type of dementia it is essential you get a diagnosis as soon as possible.
There are many conditions or situations that can cause confusion and symptoms similar to dementia and the person who is experiencing the problems must see their GP as soon as possible. The GP will then be able to refer you to a specialist for an assessment.

The following conditions can cause similar symptoms to those of dementia but may be reversible and should always be explored.

• Chest and urinary infections
• Infected pressure sores
• Severe constipation
• Depression
• Side effects from medication
• Taking medications incorrectly or taking medication that has not been prescribed
• Vitamin and thyroid deficiencies
• Brain tumours and normal pressure hydrocephalus
• Syphilis
• Sudden changes such as moving house or bereavement
• Poor sight or hearing
• Alcohol (even in small amounts)

A GP should then refer you to your local Adult or Older Adults Community Mental Health Team for further assessment. It is always important to eliminate other possible causes for the change in your loved ones behaviour before considering a diagnosis of dementia.

My loved one has been diagnosed with dementia. What support can I receive?

Your local Community Mental Health Team may be able to advise on what is available locally to help you, including day care/day centres.
Social Services should be asked to do a NEEDS ASSESSMENT for the person with dementia, and a CARERS ASSESSMENT for the person looking after them. People are entitled to these assessments as a right. The person doing the assessments will usually be called a Care Manager or Social Worker and they can help set up a package of care to help meet your needs, which may include day care, home care, help with shopping, cleaning, bathing and dressing, and a number of other things.
They should also conduct a benefit check, to make sure you are both receiving the benefits you may be entitled to.
There may be other organisations in your area, which may be able to provide you with support and advice, such as the Alzheimer's Society, Help the Aged, Carers UK and Crossroads Care.
There may be an Admiral Nurse Service near you and if there is, simply ring them and they will take it from there.
Alternatively, contact the Admiral Nursing DIRECT helpline on 0845 257 9406 or email direct@dementiauk.org. We can provide advice on what services you may have in your area, advice on benefits you may be eligible for, and information and support from the point of diagnosis to beyond bereavement.
Carers manage much better if they understand the illness better and have information on how to manage changes in the persons behaviour, some of which may be minor, others major.

What support is available for the person with dementia?

Different areas have different types of support available. The types of support may include:

• Day Hospital - where the assessment will be made, people may be invited to attend 1 to 2 days a week for a period of time whilst assessment is made and the person receives the diagnosis and some type of follow up support.
• Day Centres - once assessment is made some people attend day centres. The number of days a person can attend and the types of centre will vary from area to area.
• Support Groups - some services offer support groups for people who have a recent diagnosis. Alzheimer's Cafés - groups in community settings which often invite carers and people with dementia to attend together as well as receiving support and advice, be in a safe space and enjoy a café-like experience together.

What support is available for family carers?

• Carers Groups - are a great way of meeting other carers and sharing experiences and also enable you to meet "others in a similar situation".
• Social Services - can do a range of things, putting in services, arranging for carers to come into the person with dementia's home to assist with day to day tasks, advising on benefits and helping make claims.
• Age Concern- will be able to help with things such as benefits / attendance allowance claims, managing budgets and money issues, plus much more. For more information about Age Concern click here.
• Factsheets and Books - a huge amount has been written about dementia and it is natural that you will want to read up about this new diagnosis.

A word of caution however, do not read everything and start to worry about how you are going to cope with things that the books say might happen. You need to deal with things as they happen and spend time focusing on what you are dealing with now.

I'd like to join a support group. Can you refer any to me?

If you have an Admiral Nurse Service they should be able to recommend a local support group such as a Dementia Café or Joe's Club. Alternatively the Alzheimer's Society often run carer support groups. You can also become part of a wider network of carers by joining Uniting Carers. Call 020 7874 7209 for further information.

How can Admiral Nurses help?

Admiral Nurses are specialist dementia nurses, working in the community with families, carers and supporters of people with dementia.

The Admiral Nurse model was established as a direct result of the experiences of family carers. Admiral Nurses are named after Joseph Levy, who had dementia. He was known by his family as ‘Admiral Joe' due to his keen interest in sailing.

Admiral Nurses:

• Work with family carers as their prime focus
• Provide practical advice, emotional support, information and skills
• Deliver education and training in dementia care
• Provide consultancy to professionals working with people with dementia
• Promote best practice in person-centred dementia care

© Dementia UK

What benefits might I be entitled to?

Attendance Allowance

Everyone with a diagnosis of dementia may be entitled to ATTENDANCE ALLOWANCE if over the age of 65 and need help under the following criteria taken from the Directgov website http://www.direct.gov.uk
You may be eligible for Attendance Allowance if you are aged 65 or over and have needed help with personal care or have needed supervision because of a physical or mental disability for at least six months.

Your care needs
To receive Attendance Allowance, your disability must be severe enough for you to need any of the following:

• Help with things such as washing (and getting in or out of the bath or shower), dressing, eating, getting to and using the toilet, or communicating your needs.
• Supervision to avoid putting yourself or others in substantial danger, for example, needing someone to keep an eye on your medical condition or diet, or because you cannot control the way you behave.
• Someone with you when you are on dialysis.

There are two rates of Attendance Allowance depending on how your disability affects you:

• Lower rate - if you frequently need help with personal care or require supervision continually throughout the day only. If you require help with personal care or someone to watch over you during the night only, or if you need someone with you when you are on dialysis.
• Higher rate - if you need help with personal care, or someone to supervise or watch over you frequently throughout the day and also during the night.

You can still be eligible for Attendance Allowance even if no one is actually giving you the care you need or if you live alone.

Disability Living Allowance

If the person with dementia is under 65, then they may be eligible for DISABILITY LIVING ALLOWANCE. Directgov guidelines for eligibility as follows. http://www.direct.gov.uk

You may be eligible for the Disability Living Allowance if you are aged under 65 and you have needed supervision or help with personal care, or had walking difficulties because of a physical or mental disability for three months and you are likely to need this help or have these difficulties for at least another six months.

If you have care needs
To get the care component of Disability Living Allowance, your disability must be severe enough for you to either:

• Need help with things such as washing, dressing, eating, getting to and using the toilet or communicating your needs.
• Need supervision to avoid you putting yourself or others in substantial danger.
• Need someone with you when you are on dialysis.
• Be unable to prepare a cooked main meal for yourself (if you had the ingredients), if you are aged 16 or over.

There are three rates of care component depending on how your disability affects you:

• Lowest rate: if you need help or supervision for some of the day or you are unable to prepare a cooked main meal.
• Middle rate If you require help with personal care or someone to watch over you during the night only, or if you need someone with you when you are on dialysis.
• Highest rate: if you need help or supervision frequently throughout the day and during the night.

You can be eligible for the Disability Living Allowance for your care needs even if no one is actually giving you the care you need or even if you live alone.

Carers Allowance

Who is eligible for the Carer's Allowance? For full information and criteria visit http://www.direct.gov.uk

You may be eligible for the Carer's Allowance if you're aged 16 or over and spend at least 35 hours a week caring for someone.

They should be getting one of the following:

Attendance Allowance

Disability Living Allowance (at the middle or highest rate for personal care)
Constant Attendance Allowance (at or above the normal maximum rate with an Industrial Injuries Disablement Benefit, or basic (full day) rate with a War Disablement Pension).

How much do you get?
The weekly rate is £53.10. This is reduced by the amount of certain other benefits, including State Pension, that you receive.
If you receive certain other benefits at £53.10 or more a week, you will not be eligible to receive the Carer's Allowance as well.
You may be entitled to receive an additional amount for your husband, wife, civil partner or someone living with you who looks after your dependent children.

Who can't get Carer's Allowance?
You can't get Carer's Allowance if you're in full-time education with 21 hours or more a week of supervised study, or earn more than £95 a week after certain deductions (for example Income Tax) have been made.

Council Tax reductions for disabled people
You may be entitled to a reduction in council tax if you are in receipt of any of the following benefits. Information taken from http://www.direct.gov.uk

People who are severely mentally impaired
For Council Tax purposes, a person is severely mentally impaired if they have a severe impairment of intelligence and social functioning which appears to be permanent. To be eligible for a Council Tax reduction, the person will need a doctor's certificate saying that they are severely mentally impaired and to be entitled to one of the following benefits:

• Disability Living Allowance care component at the middle or highest rate
• Attendance Allowance
• Constant Attendance Allowance
• Severe Disablement Allowance
• Employment and Support Allowance
• Incapacity Benefit
• Income Support including a disability premium (this includes anyone whose partner has a disability premium for them included in their income-based Jobseeker's Allowance)
• The disability element of Working Tax Credit

If the person is over State Pension age but would have been entitled to one of the above benefits if they were under State Pension age, they may also be eligible for a reduction.
People who are severely mentally impaired are not counted when adding up the number of people in a property. So for example if a husband and wife were living together and one had a severe mental impairment, they would get the usual discount of 25% that a single adult living alone would get. No Council Tax is payable on a property occupied solely by people with a severe mental impairment.

People receiving care in their own home
In some circumstances, though not for example if you are receiving care from your spouse or partner, a resident carer is not counted when adding up the number of people in a property. So for example if just you and a carer live in your home then a 25% single person discount may apply.

Contact your local council office (where you pay your council tax to) and ask for a form for council tax reduction/exemption due to severe mental impairment.

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