Living alone

Many people with dementia are happier if they can live in their own home for as long as possible. Living in familiar surroundings and maintaining regular routines can be reassuring and with the right support can often help the person maintain their independence for a longer period of time. When a person with dementia moves, either to live with a family member or to enter a care home, they may feel disorientated and experience further confusion, so there are some clear benefits for enabling the person to stay at home while this is still practical. This factsheet looks at how a person with dementia can be supported to live alone.

If a person with dementia is living on their own, there are likely to be some concerns about their ability to cope, especially as their dementia progresses. Where possible, the person with dementia, their friends and family members and experienced professionals should discuss these concerns together.

Much can be done to enable someone with dementia to remain in their own home, even when their dementia is quite advanced. However, a person with dementia who is living alone will need increasing support. The person with dementia, or their carer, should get in touch with the appropriate services at an early stage (see Factsheet 454, How health and social care professionals can help, and Factsheet 465, Choices in care). Do not wait until a crisis develops.

What friends and family can do

Make caring a joint effort

Often, one member of the family will assume responsibility for the person with dementia, as the main carer, while the others are unaware of the stress that this can cause. This can be particularly exhausting when the main carer has other commitments and feels pulled in different directions. The main carer should make it clear that they need regular support. They are entitled to a life of their own, and they will not be able to help anyone if they wear themselves out. The person with dementia will also benefit from the wider interaction and social contact with others.

It is usually easier for others to contribute to care if they are involved from the start. It can be a good idea to hold a family meeting at an early stage, to work out what each member of the family can realistically offer, both now and in the future. This may help to avoid later feelings of resentment or guilt.

Support might range from regular visits or help with practical tasks, such as shopping, to financial help with care services if the relative lives too far away to help directly. Remember that support can be given in a number of different ways, and does not always need to be task orientated. Sometimes a social call to share a cup of tea and have a chat can be just as beneficial as doing some shopping.

Spending quality time together to create a life history book for the person with dementia can be fun for all involved. This not only gives everyone the opportunity to explore memories and learn more about family history, but will result in an invaluable tool to support the person's care later in their dementia.

Tell other people

Friends and family can explain the person's dementia to friends, neighbours, local shopkeepers and anyone else with whom the person has regular contact. These people may have time to chat, offer assistance in various ways or help the person if they walk away from the house and forget their way home.

Make sure helpful information is accessible

• A noticeboard with a list of helpful phone numbers (including emergency numbers) may be useful for the person with dementia in the early stages, as well as for relatives or professionals visiting the home. The noticeboard could also provide information such as the location of the stopcock, the gas and electricity meters and the first aid box.
• A week-at-a-time diary containing details about who is visiting, and when, can also be helpful and reassuring for the person.
• A short checklist placed on or near the front door can help remind the person to lock up, take their keys or put on warm clothing.

Help with managing finances

• Direct debit can be a useful way to pay all regular household bills. If this is not possible, or the person prefers to pay their own bills, the relevant gas, electricity and water companies should be informed. Consider offering an alternative contact number for a family member, so that the person is not suddenly cut off if they forget to pay.
• Arrange for payments to be made on behalf of the person with dementia if they do not want to pay for outside care, or forget to do so.
• Keep track of what is spent. Anyone handling money for someone with dementia should keep a careful account of what they spend, to avoid any potential problems later. Family members may want to know where the money is going, or the person with dementia may forget what has been arranged and, in some cases, even become concerned that people are stealing from them.

For more information on managing someone else's finances, see Factsheet 467, Financial and legal affairs, and Factsheet 472, Enduring Power of Attorney and Lasting Powers of Attorney.

Outside help

People with dementia may not realise when they need help. They may find it easier to accept help if it is tactfully introduced at an early stage.

It is important to make sure the person is receiving all the benefits to which they are entitled. Disability living allowance or attendance allowance is awarded in order to pay for extra care. See Factsheet 413, Benefits, or phone the Benefit Enquiry Line (see 'Useful organisations' at the end of this factsheet).

Carers should be aware that they may be criticised by the person with dementia, and that their attempts to help may sometimes be ignored. Although this may feel hurtful, try not to take it personally. The person with dementia may not always understand or remember everything that is being done for them, or acknowledge that the help is necessary. 

Home care workers or care attendants

Home care workers or care attendants can help with personal care, if the person with dementia agrees to this and has been assessed by social services as needing such help (see Factsheet 418, Community care assessment). The frequency of visits may range from several times a week to three or four times a day, depending on the person's needs and circumstances.

Personal care can include:

•     supporting the person with getting up, washing, dressing and using the toilet
•     changing bedding and emptying commodes
•     doing laundry
•     helping the person get ready for day care
•     supervising meals to ensure the person eats properly
•     helping the person to go to bed at night.

Domestic help

Help with tasks such as shopping and housework can sometimes be arranged by social services if the person with dementia has been assessed as needing this kind of assistance. However, in many areas social services will not provide help with these kinds of tasks.

If domestic help is arranged privately, references must be checked and candidates interviewed personally to make sure that they are suitable and that they understand about dementia. Social services should be informed about the arrangement. It is important that even private services are co-ordinated with other services as part of the person's care plan.

In some areas, voluntary organisations may be able to provide help with shopping, cleaning or social activities. Social services can provide details of who to contact.

If the person's home has become unhygienic, or the mess is out of control, social services may be able to arrange a one-off thorough cleaning.

Day care

The person with dementia may be able to attend a day care centre, arranged through social services, once a week or more. Day care services can provide company and activities. They often also provide facilities such as chiropody, hairdressing and bathing. Transport to and from the service is usually included.

Some voluntary agencies may also run day care centres, clubs, drop-in centres or befriending schemes, where volunteers visit people in their own homes. These services vary from area to area so check with social services.
Someone could also be employed privately, either to visit the person at home and keep them company, or to accompany them out to places. Again, candidates should be interviewed carefully and references checked. (See Factsheet 462, Respite care.)

Health

Any additional illness can increase confusion in someone with dementia. If possible, and appropriate, someone (such as the carer or a family member) should accompany the person to GP or hospital appointments so that they can also talk to the doctor and be aware of any medication.

If the person uses a hearing aid, glasses or dentures, these should be regularly checked. The person should also have regular dental checkups, and if they are having problems walking, should have their feet checked. See Factsheet 522, Staying healthy and Factsheet 448, Dental care and dementia.

Medication

There are some drugs available that may help with the symptoms of Alzheimer's disease. These may have some side-effects. Sometimes other drugs are prescribed to treat specific symptoms. A person with dementia should only take medication that their GP feels is absolutely necessary. For more information, see Factsheet 407, Drug treatments for Alzheimer's disease.

Some people with dementia find it difficult to remember to take the right amount of medication at the right time. Dosset boxes, with separate compartments for the days of the week and times of day, are available from the pharmacist. Once the medication has been divided into these compartments, a phone call may be all that is needed to remind the person to take their medication in the early stages. Later, a home carer or another professional who visits regularly may be able to check that the person takes their medication.

It may be necessary to remove unwanted medication and take it to the local pharmacy, so that the person with dementia does not take it by mistake. A GP or pharmacist should be consulted before the person with dementia takes an over-the-counter remedy, such as aspirin or paracetamol.

Any concerns about the person's medication should be discussed with the GP or pharmacist.

Eating

As the person's dementia progresses, shopping and cooking for them may not be enough to ensure that they eat adequately. A care worker or relative may need to be with the person to ensure that they eat at least one proper meal a day and drink enough fluid. Even if meals on wheels are provided, it may be necessary for someone to be there to make sure the meal is eaten.

It may also be necessary to check that food is not being left to go bad. It may not be enough to ensure that the cupboards and fridge are well stocked if the person with dementia doesn't remember to look for the food, or eat it. Someone with dementia may not realise that decayed food is no longer edible. For more information about eating and nutrition, see Factsheet 511, Eating and drinking.

Warmth

A person with dementia will often be more vulnerable to the cold. It is important to ensure that their home is adequately heated. If the person forgets to switch on the heating, a heating system using a time switch and thermostat could be considered. Any fire or heater must have a guard.

Some grants are available for insulation and heating costs. For more information, see Factsheet 429, Equipment, adaptations and improvements to the home.

Incontinence

People with dementia may become incontinent for a number of reasons. Incontinence can be caused by some treatable conditions, such as urinary tract infections or the side-effects of medication, so it is important that the GP is consulted in the first instance. The district nurse can give advice about strategies to deal with incontinence, as well as incontinence products, such as pads, which may be delivered to the home or laundered through specialist services.

It is easy to assume a person is incontinent and does not recognise the urge to go to the toilet, when often it is simply a matter of orientation. As the person's dementia progresses, they may find it difficult to remember where the toilet is or to find the toilet in the room. It may help to have a contrasting coloured toilet seat and a clear sign on the door. Simple aids like this can help the person to maintain their independence and dignity for longer.

For more information, see Factsheet 502, Coping with incontinence.

Home safety

If a person with dementia is living alone, there are a number of safety measures that can be taken. Although many hazards can be minimised with thought and planning, a certain amount of risk may be unavoidable if the person with dementia is to retain their independence and enjoy a good quality of life. It is important to remember that the person with dementia has the same legal right to take risks and to make choices as anybody else.

It may help if ways of handling risks are discussed by the person with dementia, family members and any professionals involved. All parties need to agree on what precautions should be taken, and what they would consider an acceptable level of risk. For more information about safety, see Factsheet 503, Safety in the home.
If the risks to the person with dementia or to other people become too great, alternative arrangements for care will need to be made.

Adaptations and equipment

There are many different adaptations and kinds of equipment that may help the person with dementia to remain safely in their own home for longer. However, some people with dementia find it hard to learn new skills or adapt to new ways of doing things.

An occupational therapist can give advice on what may be helpful for the person at their stage of the illness. Recommendations may range from grab rails in the bathroom to specially adapted cutlery or non-spill cups. An occupational therapist can be contacted through the GP or social services.

A physiotherapist can give advice on mobility aids, such as walking frames or wheelchairs. Contact a physiotherapist through the GP.

For more information, see Factsheet 429, Equipment, adaptations and improvements to the home.

Security

Security can be a problem for a person with dementia living alone. They may go out and forget to close or lock doors and windows. If they have trouble recognising people, they may welcome strangers into their home. If they become confused or afraid they may lock themselves in their home and not answer the door.

It may be helpful for a neighbour to have a spare set of keys and to keep an eye on the house and let a carer know if anything appears to be wrong. A crime prevention officer from the local police can advise on suitable window and door locks.

Safety tips

• If the person has walked away from their home and got lost in the past, it may be helpful for them to wear an identity bracelet, such as those available from MedicAlert (see 'Useful organisations'), with the phone number of a carer or neighbour on it.
• Make sure the home is well lit and that there are no obvious hazards, such as loose carpet, trailing flexes or unsteady furniture.
• Items in daily use should be within easy reach, whereas dangerous substances, such as cleaning fluids, bleach or paint stripper, should be removed or locked safely away.
• Remove locks from the bathroom and toilet if the person could lock themselves in, and remove any chains or bolts from the front door that would prevent someone from getting inside in an emergency.
• Check that electrical wiring and appliances are safe. Ask for advice from a qualified electrician. Make sure it is not possible to take an electric heater into the bathroom. Gas appliances, such as boilers and water heaters, should be regularly serviced.

If there are concerns about the person using gas or electrical appliances inappropriately, contact the gas or electricity company and ask for the person to be put on the priority service register. This means that they will be eligible for free regular safety checks and carers will be able to get advice on their behalf about safety measures, such as isolation valves.

If it might be possible for the person to forget to turn off the taps and flood the home, consider a tap adaptation, such as one that only lets out a limited amount of water. It is also possible to have hot water temperature controls fitted. Check with a reputable firm of plumbers to find out what is available, and get several estimates.

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Further reading

Alzheimer's Society booklet 1508, Living alone has been produced for people with dementia. It can be ordered from Xcalibre on 01628 529 240 or alzheimers@xcalibrefs.co.uk (One copy of the booklet is free, additional copies are 50p each).

Useful organisations

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1LB
T 020 7423 3500
   0300 222 11 22 (helpline)
E info@alzheimers.org.uk (general information)
helpline@alzheimers.org.uk (helpline)
W alzheimers.org.uk

The UK's leading care and research charity for people with dementia and those who care for them. The helpline provides information, support, guidance and referrals to other appropriate organisations.

Alzheimer's Society Talking Point

W forum.alzheimers.org.uk

Online discussion board run by Alzheimer's Society for carers and people with dementia to exchange messages with others who may be in a similar situation.

Benefit Enquiry Line (BEL)

Red Rose House
Lancaster Road
Preston
Lancashire PR1 1HB
T 0800 88 22 00 (free helpline open 8.30am-6.30pm weekdays and 9.00am-1.00pm Saturdays)
   0800 243 544 (textphone)
E BEL-Customer-Services@dwp.gsi.gov.uk
W direct.gov.uk/disability-money

National, free telephone advice and information service on benefits for people with disabilities, their cares and representatives. Note that advisers can send out forms and give advice but they have no access to personal records.

MedicAlert

The MedicAlert Foundation®
MedicAlert House
327-329 Witan Court
Upper 4th Street
Milton Keynes MK9 1EH
T 0800 581 420
E info@medicalert.org.uk
W www.medicalert.org.uk

Charity that provides an identification system for individuals with hidden medical conditions and allergies. This takes the form of body-worn bracelets or necklets engraved with the wearer's main medical conditions or vital details, a personal ID number and a 24-hour emergency telephone number that can access their details from anywhere in the world.

Factsheet 517

Last updated: February 2011
Last reviewed: September 2010

Reviewed by: Cathy Baldwin, Programme Delivery Manager, Alzheimer's Society