Factsheet

Living with dementia

Being diagnosed with dementia can come as a shock, even if it was half expected. This factsheet explains more about the different types of dementia and the help available to support and maintain independent living both for you, and your family and carers. Last reviewed: November 2014 Next review date: November 2015

Independent Age provides advice to help people claim benefits, access social care and stay independent at home. Our local volunteers provide friendship visits and calls for lonely older people. To find out how Independent Age can help you, call us FREE on 0800 319 6789 or visit . Our free wise guides and factsheets can be download from the website and ordered by phone or via our online order form. Contents

Memory loss and confusion Page 3

What is dementia? Page 4

Types of dementia Page 5

Symptoms of dementia Page 8

Diagnosis of dementia Page 10

What help is available for people with dementia? Page 11

Financial support for people with dementia Page 15

Accommodation Page 17

Caring for someone with dementia Page 20

Practical tips for caring for someone with dementia Page 23

Making decisions for someone who has dementia Page 27

Dementia and the Mental Health Act Page 30

Useful contacts Page 37

Living with dementia - November 2014 2 1 Memory loss and “confusion”

Older people with memory loss and dementia are often described as “confused”. Whether or not you have dementia, symptoms of confusion can include:

- dizziness - not being able to think as clearly or as quickly as usual - not recognising where you are - feeling tearful and agitated.

Confusion can be temporary or permanent. It does not necessarily mean that someone has dementia.

What causes confusion?

If these symptoms develop in a short space of time they could be caused by a physical illness, such as a chest or urinary infection, or not eating or drinking enough. You should see your GP as soon as possible so that your condition can be diagnosed, treated and brought under control.

The symptoms of confusion could also be a result of a reaction to any tablets or medicine you are taking. If you are prescribed any new medication, your GP should check that it will not react with something you are already taking. If you do experience side-effects, speak to your GP immediately.

Living with dementia - November 2014 3 2 What is dementia?

The term dementia is used to describe conditions that cause the progressive decline of your mental ability. Dementia will often:

- affect your ability to remember, learn, think and reason - cause a gradual loss of your social and daily living skills.

Sometimes the symptoms of dementia develop slowly and the start of the condition is difficult to pinpoint, while sometimes it can develop suddenly and progress quickly. In either case, the effect on the person with dementia, their family and carers can be very distressing.

Good to know

Dementia can affect people at any age, but it is more likely to happen the older you get. One in six people over the age of 80 will have some form of dementia. At the moment there is no cure for dementia, although treatments and medication are available that can help slow the development and symptoms of the disease.

It is important to remember that dementia is not an inevitable result of old age; most older people will never suffer from any type of dementia. If you or someone you know has been given a diagnosis of dementia which you do not agree with, you should talk to the GP and understand the reasons for this diagnosis, or you can ask for a second opinion.

Living with dementia - November 2014 4 3 Types of dementia

There are over 800,000 people in the UK who suffer from dementia. It is estimated that by the year 2025 [1], the number will rise to one million dementia sufferers. There are many different causes of dementia, but the most common types and their symptoms are listed below.

[1] Alzheimer’s Society estimate

Alzheimer’s disease

The most common form of dementia is Alzheimer's disease. This is a physical disease that causes brain cells to die, leading to a progressive decline in mental ability. The causes of Alzheimer's disease are not fully understood and are still being researched. It is likely that a combination of factors, including age, genetics, diet and general health affect whether someone gets dementia.

The symptoms of Alzheimer's disease vary from one person to another. It often starts with the person becoming more forgetful or having problems finding the right words. They might become worried about change and be unable to make decisions. They may also become more irritable and easily upset. As the disease progresses, their short-term memory may deteriorate and they may become confused about time and place. They might also start to lose their ability to understand other people and make other people understand them. Their personality may appear to change; they may resist help or behave in an unusual way. They also may not be able to carry out basic tasks, such as washing and dressing, and may become dependent on someone else for their care needs.

Living with dementia - November 2014 5 There are treatments available for Alzheimer’s disease which may slow down its progress but, as yet, there is no cure. The Alzheimer’s Society (0300 222 11 22, alzheimers.org.uk) can provide further information about treatments and what sort of questions you may wish to ask the consultant.

Vascular dementia

Vascular dementia is the second most common form of dementia and is caused by damage to the blood vessels that carry oxygen to the brain. It is usually triggered by a major stroke or a series of smaller strokes (referred to as multi-infarct dementia). It is more common in people with a history of circulatory problems or high blood pressure. Multi-infarct dementia usually leaves some of the brain's abilities intact and, while there is no way to repair the damage already done to the brain, medical treatments may slow down or prevent the development of further symptoms. A distinctive characteristic of vascular dementia is that the symptoms are not gradual, but increase in a series of sudden changes.

Dementia with Lewy bodies (DLB)

This accounts for 10-15% of dementia cases. Like Alzheimer’s, Dementia with Lewy Bodies (DLB) is a physical disease of the brain, which is not fully understood. People who have it will show symptoms usually associated with Alzheimer’s disease, but may have major fluctuations in their abilities, sometimes on a daily basis. They will also typically suffer from symptoms usually associated with Parkinson’s disease (stiffness, tremors and slow

Living with dementia - November 2014 6 movements) and experience hallucinations. Diagnosis of DLB is difficult and people are often initially diagnosed as having Alzheimer’s or vascular dementia. The hallucinations or the stiffness and trembling associated with Parkinson’s may help it to be correctly diagnosed. A brain imaging test may also be recommended. It is important that DLB is diagnosed correctly as sufferers can have an adverse reaction to certain types of medication.

Other forms of dementia

There are rarer cases of dementia that can be caused by other factors, such as damage to specific parts of the brain, other degenerative brain diseases, alcoholism, HIV/AIDS or a head injury.

Living with dementia - November 2014 7 4 Symptoms of dementia

Although dementia usually develops over a long period of time, not everyone will be affected in the same way - some people may experience a rapid decline in their mental ability. However, dementia caused by Alzheimer's disease can take 10 to 15 years to develop and may only become apparent if the person experiences a trauma, such as moving home, or a bereavement. Dementia symptoms may affect your:

- ability to learn new skills, for example, it can make it difficult to learn how to use a new piece of equipment - memory – many people become more forgetful, particularly about the recent past, for example, whether they have taken their medication or not. They may forget faces and names, even of familiar people. - ability to communicate – speech is often affected. People may find it difficult to remember certain words, names of people or objects, express themselves or to understand other people - personality and behaviour – some people experience significant mood swings, for example, they may become suddenly tearful or angry, while others may become withdrawn and delusional and believe things are happening that are not. Others may walk around, but forget what they were going to do - understanding of time and place - some people find that they get lost or end up doing things at the wrong time - mental health - some people with dementia become depressed and this can affect their ability to concentrate and cope with life - personal care – people with severe dementia may find it difficult to complete tasks in the correct order. They may

Living with dementia - November 2014 8 need help preparing meals, washing, dressing and going to the toilet - judgement – as the dementia progresses, the person may become less able to make judgements about the risks that they face from hazards. For instance, they might not be able to use the cooker safely but are unaware of this - mobility – as the illness progresses the person’s ability to keep their balance and walk steadily may deteriorate - continence – a person with dementia may not recognise the need to use the toilet. If they have difficulty remembering learnt skills, they may not be able to locate or use the toilet.

Many people who are in the early stages of dementia may only experience slight forgetfulness and occasional out-of-character behaviour. People with advanced dementia are often severely affected and may require 24-hour care at home or in a care home which employs staff who specialise in dementia care.

Good to know

The Alzheimer’s Society has published a best practice guide for health and social care professionals to use when they are caring for people with dementia. It is called ‘Optimising treatment and care for people with behavioural and psychological symptoms of dementia’ ( alzheimers.org.uk/site/scripts/download_info.php?fileID=11 63).

Living with dementia - November 2014 9 5 Diagnosis of dementia

If you are worried that you or someone you know may have dementia, speak to a GP as soon as possible. They will be able to check whether you, or the person you are concerned about, is demonstrating signs of dementia and will investigate the cause of the symptoms. Sometimes, the symptoms are caused by other treatable conditions, such as depression, thyroid gland disorders or a reaction to certain drugs. It is important that other possible causes are investigated.

What happens next?

The GP will normally refer the person with dementia to a psychiatrist who specialises in the care of older people for a full diagnosis – called a psycho-geriatrician. The person with dementia may be referred to a memory clinic, where professionals from a wide range of disciplines will carry out a thorough investigation into the most likely cause of memory loss, and can then begin the appropriate treatment. In order to be clear about the diagnosis, the psychiatrist may ask the person with dementia to visit the assessment unit or memory clinic over the course of a few weeks, or a community psychiatric nurse (CPN) may visit them at home.

You can get more advice about dementia from the Alzheimer's Society (0300 222 11 22, alzheimers.org.uk).

Living with dementia - November 2014 10 6 What help is available for people with dementia?

Living with dementia or caring for someone with dementia can be difficult and can cause stress, financial hardship and a sense of isolation. It is important to try and get as much support as possible.

Support from the National Health Service

If you have symptoms of dementia, your GP should refer you to the local hospital's psychiatrist for older people or the memory clinic, if there is one in your area. If you are diagnosed with dementia, the psychiatrist will provide advice on medication that might help to control the condition or slow down the development of the disease. You may also be provided with other services, which could include:

- seeing a community psychiatric nurse (CPN) to give advice and support - being offered a regular place in a day hospital or a day centre (if you have severe dementia) where you can receive care and therapy, as well as lunch and leisure activities. This support can also help your family, by giving them a regular break from their caring role - periods of regular respite care in a nursing or regular care home offered by the NHS and your council's social services department - visits from district nurses in your own home to provide nursing care, such as changing dressings or giving medication - NHS Continuing Healthcare Funding to pay for your care (see chapter 8) if you have severe dementia.

Living with dementia - November 2014 11 Support from your council

- The social services department at your council must carry out a needs assessment if it appears that you need social care support. If your needs meet the eligibility criteria for support from the council, they may be able to provide support services such as personal and home care, meals at home, a laundry service or cleaning. For more information about services you may be able to receive, see our factsheet: Help at home: What may be available in your local area - Occupational therapists can advise on and arrange for you to have specialist equipment, such as a walker or hand rails to help you carry on living at home. They can also arrange for larger adaptations to your home, such as a walk in shower or a stair lift. For more information about getting equipment or adaptations, see our factsheet: Adapting your home to stay independent - Telecare refers to technology products which can help older people, including those with dementia, to stay in their own home for longer. This includes equipment such as flood detectors and pendant alarms. For more information on telecare and how to get it, read our factsheet: Telecare and telehealth: what it is and how to get it - Social services must also look at the needs of carers of people with dementia. Carers can ask for an assessment of their own needs. This is known as a carer’s assessment. Social services may be able to provide respite care, a sit-in service or training to support you in your role as a carer. For more information, see our factsheet: Carers: what support is available (0800 319 6789, independentage.org).

Living with dementia - November 2014 12 Independent advocacy

People who lack the capacity to make their own decisions can often benefit from the support of an independent advocate. This is someone who can act in the interests of the person, making sure their opinions and wishes are taken into consideration. An independent advocate may be particularly helpful in situations where there is a dispute among family members as to the best future care of a relative, or when there is conflict about future care decisions between the older person and the professional or statutory care services. An independent advocate can try to establish the wishes and needs of the older person and represent their points of view to the professionals involved. For more information about advocacy, see our factsheet: Independent advocacy (0800 319 6789, independentage.org).

Support from the voluntary sector

In many areas, voluntary and charitable organisations provide services to support people with dementia and their carers.

- The Alzheimer's Society (0300 222 11 22, alzheimers.org.uk) is a national organisation set up to help and support people with dementia and those caring for them. They produce a wide range of booklets and guides on dementia, and their national office can provide specialist advice. They have a network of local branches throughout the country, which offer a range of services, such as advice and support groups for the carers of people with dementia. Contact the central office for details of your local office.

Living with dementia - November 2014 13 - Dementia UK (0845 257 9406, dementiauk.org) have Admiral nurses in various parts of the country. Admiral nurses work to promote good practice in dementia care and, in particular, to support the needs of carers and families of people with dementia. Their helpline is open Monday to Friday. - Age UK (0800 169 65 65, ageuk.org.uk) is a national organisation with local branches that often provide services such as good neighbour schemes, handywork and gardening services, lunch clubs and advice services. You can contact the national office to obtain details of your local office.

There may be other services provided by other voluntary groups, depending on where you live. Your local library or council social services department should be able to tell you about these.

Living with dementia - November 2014 14 7 Financial support for people with dementia

People with dementia may need practical support with managing their finances. You may have extra expenses, such as paying for care, so it is important to make sure you are receiving all the benefits you are entitled to.

Welfare benefits: Attendance Allowance and Personal Independence Payment

Attendance Allowance is an important benefit for people with dementia. It is paid to people aged 65 and over who need regular supervision in order to avoid putting themselves or others in danger, or who need regular help with personal care, such as washing, dressing and going to the toilet. This benefit is not means-tested; it is determined solely by your care needs.

If you are under 65, you can claim Personal Independence Payment, which is gradually replacing Disability Living Allowance.

Good to know

If you receive Attendance Allowance or Disability Living Allowance / Personal Independence Payment, it is possible that you might be able to get a reduction in your council tax bill. For more information, see our factsheet: Council Tax Support and Housing Benefit (0800 319 6789, independentage.org).

For more information about these benefits, see our factsheets on Disability Benefits:

- Attendance Allowance

Living with dementia - November 2014 15 - Disability Living Allowance and Personal Independence Payment.

Getting more from your Pension Credit

If you receive Pension Credit, you might be able to get some extra money, called a Severe Disability Premium. You can get this if:

- you are also getting Attendance Allowance (or Disability Living Allowance / Personal Independence Payment) - you live on your own - nobody is getting carer’s allowance for looking after you.

For more information, see our factsheet: Pension Credit (0800 319 6789, independentage.org).

Looking after your benefits

If you are getting benefits but are unable to manage the money yourself, it is possible for you to arrange for someone else that you trust to collect the money from your bank account. Your bank or building society can arrange for this.

The Department for Work and Pensions (DWP) can appoint another person to act as your ‘appointee’ to claim, receive and spend your benefit money on your behalf. You can find more information about this at gov.uk/become-appointee-for-someone-claiming-benefits.

Living with dementia - November 2014 16 8 Accommodation for people with dementia

Many people with dementia eventually need to move into accommodation suitable for their particular needs - if they become too ill or their behaviour is too difficult to manage at home.

Sheltered housing schemes

In some areas, sheltered or extra care housing schemes have been set up to provide accommodation and support for people with dementia. For information on local schemes, contact your local council social services or the Elderly Accommodation Counsel (0800 377 7070, housingcare.org ). You may also want to see our factsheets: Housing options in later life, and Extra Care Housing (0800 319 6789, independentage.org).

Care homes

Many care homes cater specifically for the needs of people with dementia. Care homes registered for people with advanced dementia are often described as EMI (Elderly Mentally Infirm) care homes. You can get a list of EMI care homes in your local area from the Elderly Accommodation Counsel (0800 377 7070, housingcare.org). The Alzheimer’s Society can also provide you with a list of specialist care homes (0300 222 11 22, alzheimers.org.uk).

Good to know

Past inspection reports of care homes are available from:

the- Care Quality Commission (03000 616161, cqc.org.uk) in England

Living with dementia - November 2014 17 - the Care and Social Services Inspectorate (0300 7900 126, cssiw.org.uk) in Wales - the Care Inspectorate (0345 600 9527, careinspectorate.com) in Scotland.

Looking at these reports may help inform your decision when choosing a care home. It may be possible for the person with dementia to have a trial stay at the care home to see if it would be suitable for their needs.

To do...

If you think that someone with dementia needs to move into a care home, you should contact the council to request a needs assessment. If they are assessed as needing to go into a care home, they will also have a financial assessment to decide how much they will have to pay towards their care home fees. For more information, see our factsheet: Care Home Fees: paying them in England (0800 319 6789, independentage.org). You might also find our Wise Guide : Choosing a care homeuseful. Call 0800 319 6789 to order your free copy.

NHS Continuing Healthcare funding

If the person with dementia has severe, complex and unstable health needs, the NHS may be able to cover the cost of ongoing treatment in a care home. This generally means that the person needs 24-hour care by a medical team.

To be eligible for NHS Continuing Healthcare funding, the person has to meet national criteria - which makes it clear

Living with dementia - November 2014 18 that NHS Continuing Healthcare funding can be granted to someone who has dementia.

For more information about NHS Continuing Healthcare, see our factsheet: Continuing Healthcare: should the NHS be paying for your care? (0800 319 6789, independentage.org).

Living with dementia - November 2014 19 9 Caring for someone with dementia

How to cope

It is estimated that there are over 670,000 people in the UK caring for someone with dementia.

It can be difficult to accept that someone you care about has dementia. It is also likely to be distressing to care for someone who is changing, especially if they no longer recognise the people they are close to.

Caring for someone with dementia can often lead to feelings of resentment, frustration, anger and guilt. It may help to accept that these feelings are normal and will happen rather than trying to suppress them. There is no easy solution to the problems and frustrations that carers face when dealing with complicated and distressing symptoms of an illness such as dementia. Although the person with dementia may not be able to make sense of what is happening, they will still be able to sense the atmosphere and tension.

It can help to direct feelings of anger and frustration in a positive way. If you have enough time and support, you may wish to exercise or go for a walk to relieve these feelings.

You may feel embarrassed if the person with dementia behaves inappropriately in public places. It can help if you tell friends and neighbours about the illness. This may help them to understand why someone behaves in a particular way.

Living with dementia - November 2014 20 Getting support

If you care for someone with dementia, you can request a ‘carer’s assessment’ from your council's social services department. The assessment will look at what support services you need so that you can continue in your caring role. You may also be entitled to Carer’s Allowance. For more information about support for carers, see our factsheet: Carers: what support is available (0800 319 6789, independentage.org).

Carers UK (0808 808 7777, carersuk.org) is a national organisation providing advice and support to carers. It also runs support groups where you can talk to people in similar circumstances. Their helpline is open Monday to Friday.

Communication with someone who has dementia

Sometimes it can be difficult to communicate with someone who has dementia because they can get confused or cannot articulate what is on their mind clearly. There are simple things that you can do that may help, though, like making sure that any hearing aids, glasses or dentures they have are working properly. Speak clearly and slowly to the person with dementia rather than raising your voice. Alternatively, they may find it easier if you write down what you want to say. Offering simple choices rather than leaving questions open-ended can be an effective way of having meaningful interaction.

Body language and touch can be important when communicating with a person with dementia, especially if they have difficulty understanding spoken communication. However, some people may feel threatened by this

Living with dementia - November 2014 21 method. Again, it depends on the individual. You can contact the Alzheimer’s Society ( 0300 222 11 22 , alzheimers.org.uk) for further advice on communicating with a person with dementia.

Past memories

Talking about the past can be a valuable experience for you as the carer and the person with dementia. Although dementia is responsible for memory loss, it is usually short-term memory that is most severely affected. The person with dementia can normally remember some things from the past. Reminiscence therapy focuses on these memories as it can be comforting for both of you to talk about the past and share experiences. Using old photographs, postcards, music and even visits to places related to the past, can help the reminiscence experience. However, in rare cases, for example, where a person is experiencing dementia related to post-traumatic stress disorder, recalling memories can cause distress. The Alzheimer's Society can provide more advice on this (0300 222 11 22, alzheimers.org.uk).

Living with dementia - November 2014 22 10 Practical tips for caring for someone with dementia

Washing

A person with dementia may forget to look after themselves properly and may need reminding and/or help to carry out personal care tasks such as washing and drying themselves. It is important to make sure that:

- the bathroom is warm - there are non-slip rubber mats in the bathroom - there are grab rails on the side of the bath and toilet. Your local social services may be able to arrange this for you or they can be bought and fitted privately - the cold water is run in the bath before the hot - respect and dignity are offered at all times.

As washing is such a personal matter, it may be difficult for the carer to supervise or wash the person with dementia. For example, a daughter may find it difficult to bathe her father. If this is the case, contact the council to request a needs assessment and ask about the possibility of a male home care worker to help with bathing.

Dressing

Laying out clothes in the right order can make it easier for a person with dementia to dress themselves. Some people find that using slip-on shoes and easy fastening clothes (such as those with Velcro instead of buttons) makes dressing easier. It is also important for the person with dementia to choose the clothes that they like to wear,

Living with dementia - November 2014 23 remembering to ensure they are suitable for the weather conditions.

Eating

Eating can be a problem for people with dementia as some people can lose their appetite or find it difficult to use cutlery or to swallow food. Eating will be easier for them if the table is laid simply with just one set of cutlery, for example. You can buy specially designed cutlery to make eating easier. The Disabled Living Foundation (0300 999 0004, dlf.org.uk) has information on different types of aids to help you eat and where you can get them. If the person with dementia appears to develop swallowing problems, contact their GP to request a referral for an assessment by a speech and language therapist who specialises in swallowing problems. You should also ensure that if they wear dentures, they are fitted correctly.

People with dementia may also get restless or distracted during meal times. Meals should be unhurried and made at the same time each day. Avoid distractions, such as having the TV on or people coming and going during meal times. The person with dementia may need to be prompted to eat, but do not pressurise them to eat if they are getting distressed.

Continence

Incontinence can be a problem for someone with dementia. It is always important to check first that a treatable medical condition is not causing the incontinence. If the condition is not treatable, you should contact your local continence advisor through the GP. There are a number of aids

Living with dementia - November 2014 24 available to help with incontinence, such as Kylie sheets (one-way bed sheets) and incontinence pads which are available free from the NHS. You can get information and advice about continence issues from The Bladder and Bowel Foundation nurse helpline (0845 345 0165, bladderandbowelfoundation.org).

‘Wandering’

It is quite common for people with dementia to be described as ‘wandering’. This is when they may be motivated to start something or go somewhere, but because of the effects of the dementia, they cannot remember what their original intention was. This may cause the person with dementia to become agitated or distressed, and they may appear restless. These symptoms may be worrying for the carer, especially if the person tries to leave their home. An understanding that the person with dementia is not ‘wandering,’ but may in fact be ‘searching’ for something, may help the carer to cope with the symptoms. Another reason for the behaviour may be the physical need for exercise. This can be alleviated by making sure that the person with dementia goes on regular accompanied walks or other forms of exercise. The Alzheimer’s Society ( 0300 222 11 22 , alzheimers.org.uk) can offer further advice on wandering.

Aggressive behaviour

Some people with dementia can present behaviour that appears aggressive. This is a symptom of the illness, which can appear or disappear at any stage of the illness. Aggressive behaviour is often the result of resistance to

Living with dementia - November 2014 25 something they feel frightened about. If you can identify what the person with dementia feels fearful about, you may be able to calm them. The psychiatrist or community psychiatric nurse may be able to advise and help and you may find it useful to discuss the issue at a carers’ support group with other carers who may also be experiencing similar problems. The Alzheimer’s Society ( 0300 222 11 22 , alzheimers.org.uk) can provide details of carers’ support groups in your local area.

Living with dementia - November 2014 26 11 Making decisions for someone who has dementia

Assessments of someone’s capacity

The Mental Capacity Act 2005 starts with the assumption that everyone has ‘capacity’ (the ability to make informed decisions), unless it is proven otherwise. If you have doubts about someone’s mental capacity you should ask for them to be assessed by a psychiatrist, a relevant medical professional, or a social worker, who should take into account the individual circumstances of the situation.

To do...

If important decisions need to be made about the person’s future or treatment, it may be a good idea to get a formal assessment of their capacity. This would be carried out by a medical professional such as a psychiatrist or psycho-geriatrician (a psychiatrist who specialises in working with older people). Someone may have capacity to make some decisions, but not others. For example, a person may not remember who the Prime Minister of the UK is, but can be clear about whether or not they want to move into a care home.

Becoming a deputy

If you have a relative with dementia, you may find that you need to make some decisions on their behalf if they are unable to decide for themselves, or are unable to communicate their decision. If they have not already appointed an attorney under a Lasting Power of Attorney

Living with dementia - November 2014 27 (LPA) to make health and welfare decisions (see below), you can continue to make care decisions informally on their behalf, as long as the decisions that you make are in their best interest. However, to make some health and welfare decisions, you need to apply to the Court of Protection to become a deputy ( gov.uk/become-deputy).

Lasting Power of Attorney

A Lasting Power of Attorney is a legal document giving someone you trust the legal right to make decisions on your behalf if you should lose the capacity to make your own decisions. This must be arranged whilst you still have the mental capacity to make your own decisions. (gov.uk/power-of-attorney).

There are forms that you need to complete, and then you need to register your Lasting Power of Attorney with the Office of the Public Guardian.

Good to know

You can appoint more than one attorney if you want to.

For more information on how you or a friend or relative can make preparations to manage your financial affairs, or to make decisions about your personal welfare if you become unable to do so yourself, see our factsheet: Managing my affairs if I become ill (0800 319 6789, independentage.org).

Protecting the person with dementia

There are rules in place to protect the person with dementia, as well as the person making decisions on behalf

Living with dementia - November 2014 28 of them. These rules are set out in the Mental Capacity Act 2005. Family members and professionals who need to make a decision for someone who lacks mental capacity have to comply with this legislation. Guides have been issued by the government on how the Mental Capacity Act should be followed ( justice.gov.uk/guidance/protecting-the-vulnerable/mental- capacity-act/).

To take out an LPA (a health and welfare LPA or a financial LPA) or apply to be a Deputy, see the Justice website at justice.gov.uk/global/forms/opg/index.htm. You can also contact the Office of the Public Guardian by email ( [email protected]).

Living with dementia - November 2014 29 12 Dementia and the Mental Health Act

Occasionally, a person with dementia may behave in such a way that it puts themselves or those around them at risk. If this occurs, it may be necessary for the person with dementia to be hospitalised while an assessment of their mental health or appropriate treatment takes place. The person with dementia can voluntarily attend in-patient hospital treatment, or can be compulsorily detained under a section of the Mental Health Act 1983 (amendments to this Act are made in the Mental Health Act 2007). The most likely compulsorily sections relevant to people with dementia are sections 2, 3, 4, 7-10, relating to Guardianship, and section 117 in regard to after care services.

Nearest Relative

Section 26 of the MHA defines who will be considered the ‘Nearest Relative’ to a patient who is being compulsorily detained in hospital. The Nearest Relative is a specific legal term so does not necessarily mean the same thing as the next-of-kin. It is the first surviving person from the following list, in descending order:

- spouse or civil partner or a live-in partner of more than six months - son or daughter - father or mother - brother or sister - grandparent - grandchild - uncle or aunt

Living with dementia - November 2014 30 - nephew or niece - a non-relative who has lived with the patient for five years and over.

If the patient is living with or being cared for by a relative on the list, then this person will be considered the nearest relative.

An amendment to the MHA 1983 (MHA 2007) gave patients the power to apply to the courts to displace their ‘Nearest Relative’ if they believe that this designated person will not act in their best interests. A patient who lacks mental capacity to make a decision about replacing their ‘Nearest Relative’ can now be legally represented in these court proceedings.

Applying for compulsory detention

You can only be compulsorily detained in hospital under one of the relevant Sections of the Mental Health Act. Under the MHA 2007, an approved mental health professional (AMHP) no longer needs to be an approved social worker. Provided the person has the necessary qualifications, registration and experience, a psychiatric nurse, psychologist and occupational therapist may also qualify as an AMPH. Alternatively, the Nearest Relative can apply for a person exhibiting mental health problems to be detained for assessment, provided they have seen that person within the previous 14 days. The 14-day period also applies to the AMHP. A compulsory admission to hospital must be authorised by two doctors, one of whom is usually a psychiatrist and the other is preferably known to the patient, such as their GP. One of the two medical

Living with dementia - November 2014 31 authorisations must be an approved doctor under Section 12 of the MHA who has specialist experience in the diagnosis and treatment of mental disorders.

Section 2 of the Mental Health Act

If the person with dementia is admitted to hospital under Section 2 of the MHA, they can be detained for assessment and treatment for a maximum of 28 days. Normally a Section 2 cannot be renewed, but it can be extended in certain circumstances. If it is felt that the person should be detained for longer, it is likely that a Section 2 will be converted into Section 3. The AMPH must make all reasonable efforts to inform the Nearest Relative if the person with dementia is detained under section 2 of the MHA and advise them of their power to apply for their discharge.

Section 3 of the Mental Health Act

A Section 3 means the person can be detained in hospital for treatment for up to six months. A Section 3 can then be renewed by a further six months, and then for a year at a time. A Section 3 can be applied for by the Nearest Relative, or AMHP acting on behalf of a Nearest Relative, in the same way as a Section 2. It may also be authorised by the responsible medical professional following a period of assessment carried out under a Section 2. Where practicable, the Nearest Relative must be informed by the AMPH that an application for a Section 3 is being made. If the Nearest Relative objects to this application, it cannot go ahead unless an application is made to the county court to have the Nearest Relative displaced. If the displacement

Living with dementia - November 2014 32 application is not successful, the Nearest Relative can give notice to the hospital managers that they wish to discharge the detained person, or they can appeal to a First-Tier Tribunal in England, or Mental Health Tribunal in Wales, to have the detained person discharged from the Section.

Section 4 of the Mental Health Act

A Section 4 can be implemented in emergencies where only one doctor can be found. In these circumstances, the AMHP would apply for an emergency detention and a doctor would approve it. Under a Section 4, a person can only be detained for 72 hours so that a full Mental Health Assessment can take place.

Section 117 - Aftercare services

The local Clinical Commissioning Group (CCG) (which has replaced the Strategic Health Authority and the Primary Care Trust in local areas) and the local council social services have a responsibility to arrange for aftercare services and support for someone who has been detained under a Section 3 of the MHA. This support is provided free of charge to the patient and may include the costs of residential care in a care home. Section 117 should continue as long as the mental health condition of the patient persists. This duty can also apply to patients who have been discharged from a Section 3 while in hospital, but who have remained in hospital as a voluntary patient. Section 117 aftercare services are reviewed regularly, but cannot be withdrawn without a proper assessment of the patient by both the health authority and social services. Both authorities must be satisfied that the person’s mental

Living with dementia - November 2014 33 disorder has improved to the extent that he or she no longer requires the aftercare services. The courts have stated that in the case of dementia, it would be difficult to see a situation where improvement of the mental disorder would become a reality (R v Manchester CC, ex p Stennett, High Court). The same conclusion has been reached by cases brought before the Local Ombudsman.

How to challenge compulsory detention

If you are detained in hospital, the MHA managers at the hospital must try to make sure that you or your Nearest Relative are informed of your rights. This information may be given to you by the responsible clinician, the Mental Health Act administrator or your social worker. You should receive written information about the Mental Health Act. The ward can provide you with a list of mental health legal practitioners, as well as access to an Independent Mental Health Advocate (IMHA). An IMHA’S role is to help and support patients to understand and exercise their legal rights.

You can challenge a section of the MHA in the following ways:

- You can make a request to the health professional in charge of your care to discharge you. - You can apply to a First-tier Tribunal if you live in England or a Mental Health Tribunal if you live in Wales. You can ask hospital staff on your ward, an IMHA or the hospital’s Mental Health Act administrator to assist you in finding a solicitor who can represent you at the tribunal. - You can ask the hospital manager to discharge you. The manager can convene a meeting of relevant hospital

Living with dementia - November 2014 34 representatives and staff. However, the hospital manager cannot overrule the decision of your responsible clinician. You should be able to take a family member, friend or advocate with you to the meeting. A solicitor may be able to attend for free if you are preparing for your case to be heard by a tribunal and Legal Aid is available for people appealing to both hospital managers and the Tribunals. You can also use the meeting to express to the staff any concerns that you have about your care and treatment. - Your Nearest Relative can discharge you from compulsory detention in hospital. However, the responsible clinician can overrule this action on medical grounds. To do this, the Nearest Relative must put their objections to your compulsory detainment in a letter addressed to the hospital managers. Your Nearest Relative can also apply to the tribunal for your discharge.

The First Tier Tribunal in England, or the Mental Health Review Tribunal in Wales, operates independently from the hospital that is detaining you. The tribunal will take into account your views or those of your Nearest Relative and also the legal duties imposed by the Mental Health Act, before deciding whether or not you should continue to be detained in hospital. If you are detained under a Section 2, the tribunal hearing must take place within a week. If you are detained under a Section 3, the hearing should take place within eight weeks or sooner if the case is considered urgent.

Guardianship

Section 7 of the Mental Health Act 1983 allows the local council social services, or a named individual to be appointed Guardian of a person with a mental disorder on

Living with dementia - November 2014 35 the recommendation of two doctors and an application of an AMHP or Nearest Relative. Section 37 allows a court to make a Guardianship order.

A Guardian has three powers. These are:

- the power to require the patient to reside at a specified place - the power to require the patient to attend specified places for medical treatment - the power to require access to be given to the patient by a doctor or an approved mental health practitioner.

However, a Guardian has no authority to make decisions about medical treatment and has no control over the person’s financial affairs. A Guardianship Order will initially last for six months and can then be renewed for an additional six months. After this time, it can be renewed annually.

A Guardianship Order cannot proceed if the Nearest Relative objects to it, unless the Nearest Relative is displaced by the authorities and their powers are transferred to another person. You or your Nearest Relative can appeal to a First-tier Tribunal in England, or Mental Health Tribunal in Wales, if you wish to challenge the Guardianship Order. A Guardianship Order must end if the tribunal does not believe you have a mental disorder or it is unnecessary as you do not pose a risk to yourself or others.

Living with dementia - November 2014 36 12 Useful contacts

For general information, advice and support when dealing with dementia:

- Alzheimer’s Society (0300 222 11 22, alzheimers.org.uk) - Dementia UK (0845 257 9406, dementiauk.org)

For issues about the mental capacity of someone with dementia:

- Office of the Public Guardian (0300 456 0300, gov.uk/government/organisations/office-of-the-public- guardian)

For general support and advice for carers:

- Carers UK (0808 808 7777, carersuk.org)

Living with dementia - November 2014 37 This factsheet has been put together by Independent Age's expert advisers. It is not a full explanation of the law and is aimed at people aged over 60.

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