Getting Help
Don't be afraid to ask for help, or feel that you are failing if you cannot cope. Much of the responsibility of care, especially in the early stages, often falls onto one relative or friend, who may well be you. This can be extremely stressful and exhausting and others involved may not realise just how many demands are put on you.
If you wish to care for the person yourself, it is important that you are fit and well, physically and mentally. Getting help and moral support will enable you to cope and continue to care.
- Try to have clear and regular communication with family and close friends from the outset.
- Hold meetings at the outset and as the individual's needs change so that necessary support can be discussed and shared.
- If possible, agree a rota of visits among family and friends living nearby - it will stop all the pressure being on you.
- Encourage family members to bring old photos or objects that would prompt memories and reminiscence.
- If the person you are caring for finds it distressing to spend time with other people they don't recognise, ask family and friends to help in other ways such as shopping or cooking.
Dementia care solutions for your own home
Dementia is an umbrella term used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities.
Living at home with dementia can be difficult. Familiar surroundings are comfortable and reassuring, but ensuring the safety of the person with dementia can be a challenge. Often, the stress of this is felt by family and carers. For many people who care for someone with dementia a major cause of concern and stress is the fear of the person with dementia wandering and becoming injured. To help manage this, unobtrusive sensors can be placed at strategic points in the home. These will automatically raise an alert if activated.
Bupa offers a range of sensors, to help detect when the person with dementia is moving about unexpectedly. These sensors either link to a personal pager used by the carer (in the same house), or link to our monitoring centre, 24 hours a day, 7 days a week. This allows the person with dementia more freedom in the home. Their carer can be more relaxed, secure in the knowledge that they will be alerted immediately, if needed.
Pressure mat sensors
This mat detects when the person with dementia is 'on the move' - eg from their favourite chair, through a particular door, into the bathroom. more about pressure mat sensors
Bed occupancy sensor
This sensor detects absence from the bed - either immediately or after a set time, to allow for bathroom vists. more about bed occupancy sensor
Property exit sensor
This is triggered by the opening of a door, and is most commonly used on external doors, to help keep the person with dementia safe. more about property exit sensor
The person with dementia may not realise or want to admit that they need help, and older people can be very proud. Help might be more easily accepted if it is introduced in the earlier stages of dementia.
Help is available from various sources and can differ from region to region. Contacting your local social services department or local branch of the Alzheimer's Society is a good starting point.
Community Care Assessment
Each District Health Board has a community needs assessment team, which is responsible for assessing the needs of individuals who may require care services. They approve publicly funded services and can help you to gain assistance from private agencies and non government agencies and volunteer services. Your GP can refer you for a needs assessment or you can contact the service directly. This assessment is carried out in the individuals home so the needs assessor can see as much as you can.
Sometimes there may be a charge for some of the services arranged and to enable the provision of services the person with dementia often has to have their finances assessed.
- Home care workers or care attendants can help with the personal care of the individual such as getting the person up in the morning, washing and dressing and putting them to bed at night.
- Day care may be available locally in the form of day care centres or drop in centres
- Private care - you may be able to arrange domestic or personal care support privately through a nursing or home care agency
- Respite Care
- Home Care – washing ironing and vacuuming
To get in contact with the Needs Assessors in your local area, contact your local DHB (District Health Board) of hospital, of ask your GP to refer you. Alzheimers NZ can also help.
There is a wide range of equipment available which you may find useful in assisting with daily living. The need for this will vary as the dementia progresses, but could include:
- prompts or memory joggers such as notice boards, large or talking clocks or thermometers
- mobility aids such as wheelchairs, walking frames, stair lifts or hand rails
- continence aids such as raised toilet seats, bed pans, commodes and pads
- washing aids such as walk-in or sit-in showers, bath seats or hoists
- specialist cutlery, cups or crockery to enable the individual to feed themselves for as long as possible
- kitchen adaptations such as glass fronted refrigerators
- medication aids such as boxes for tablets with a section for each day of the week and times of the day
- safety devices such as pressure pads, that can be placed by doors which detect movement, gas detectors, devices to control the temperature of hot water and restricted flow taps.
Your Needs Assessor or GP can make a referral for these (eg occupational therapist for house modifications, continence nurse advisor)
It is really important that you care for yourself, whether it is because you are also leading your own life, wanting to provide the best possible care to the person you look after, or planning for the time when you no longer care for the person with dementia. You don't have to cope alone. There are many sources of help available.
The simple things are important.
- Getting enough rest
- Eating well
- Taking breaks from caring
- Getting some fresh air and exercise
- Getting the support of others to ease pressure, frustrations and general ability to cope
- Checking whether you are entitled to benefits
- You are entitled to a carer's assessment to identify ways you can be helped
Carers NZ website has a vast array of information about help and advice you may need. www.carers.net.nz
Support groups in your area can give you the opportunity to talk to other people in the same situation as well as sharing tips and advice, worries and frustrations.
Find out about your local groups from:
Carers often feel that moving the person into a home is a 'betrayal'. You may feel that you have let the person down, or that you should have coped for longer. You may have previously promised the person that you would always look after them at home, and now feel forced to break that promise.
Talk this through with someone who understands and who can help you come to terms with your decision. Remember, promises were probably made in a completely different situation when you had no idea of all the strains and stresses that lay ahead.
The move to a care home doesn't need to mean giving up your caring role entirely unless that is what you want. It's just a different way of caring and your involvement will still be important.
The effects of dementia worsen over time, and most people will need to go into specialist accommodation before they reach the last stages of their dementia. There may be a number of reasons why a person has to move on from their own home:
- the person with dementia is becoming unsafe on their own, eg leaving cooker on or wandering into the street
- carers are having to provide increasing physical support for things like getting in and out of bed
- caring for the person is becoming too much for the primary carer
- levels of confusion or frustration are causing the person to become very upset or aggressive, or to do things which are inappropriate
It's common to feel uncomfortable about the idea of a care home and you may feel guilty, but most people with dementia will reach a point when they will be safer and more comfortable in specialist care. They would not want to make life difficult for their family and friends but are probably unaware of the impact that they are having on others.
They may also be finding life at home increasingly difficult, confusing and frightening themselves. Living in a care home not only provides personal and health care within a setting that is safe, it also provides the opportunity for activities and companionship, and importantly it can offer peace of mind to all concerned.
A good dementia care home should show interest in:
- Understanding the needs of the you and your loved one
- the person's life history
- how their food preferences will be catered for
- how they'll provide the kind of activities the person likes or the ability for the person to be somewhere quiet and calm
- how their room can be personalised
- things they may prefer to do in their own room
- how you could be involved in their care if you want to be