All posts tagged AlZheimer’s Society

Caring For An Elderly Relative

Caring for an older disabled relative can have practical, financial and emotional challenges. But you’re not alone. There are over 6.5 million carers in the UK of which 1.5 million are aged over 60.

Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. They are people like you who provide care without pay, out of love, respect, responsibility and duty. Carers give so much to our society yet they often experience poor health, poverty and discrimination as a consequence of caring.

Wear the ‘Carer’ label

I have met many people over the years who refuse to wear the label of carer, preferring to perceive himself or herself as a son, daughter or other family member. For some people this is really important and their wishes should be respected. There are benefits though in using the term carer, if you provide regular care and support to someone (your relationship to them doesn’t matter) because it will enable you to get help when you need it.

Be persistent when looking for support

The contribution that carers make is often forgotten and taken for granted. Services can be difficult to access, complicated to understand and information about available services can sometimes be difficult to obtain.

mother and daughter pic

Social Services and NHS Trusts are given grants from central government to provide services for those carers, who provide substantial and regular support to people receiving social care support. Those services include, for example, breaks from caring responsibilities and gym and swimming fees to promote their own health and well-being.

However, it is very much a postcode lottery and the priority given to providing support for carers, especially if the person they care for fund their own care and support, varies enormously across the country.

Take care of YOU

When I was caring for my terminally ill father, I  found that I quickly became lonely and felt isolated, so make sure you have someone to talk to regularly and maybe join a Carers Forum where you can get support, information and advice from other carers. Also you need regular breaks from caring to recharge your batteries. If you check out the organisations listed below, you will find the support you need  to do this.

Looking after yourself is very important.  How can you maintain stamina for such an emotionally and physically demanding role if you don’t look after yourself?

Useful resources

To help you find out what is available quickly, I have listed some services that will help you.

The Carers Direct helpline: 0808 802 0202, offers confidential information and advice on caring by calling.  Lines are open 8am to 9pm Monday to Friday, and 11am to 4pm weekends. Calls are free

Carers Direct also offers lots of information and advice for carers on their website  Carers Direct  and also offer an excellent practical Guide To Caring

Carers UK also offer a comprehensive range of information for carers on their website www.carersuk.org or contact their free Carers Line 08088 08 777

Alzheimer’s Society. Has information about caring for someone with Dementia. You can find them on their website, www.alzheimers.org.uk or look in your relative’s phone book for their local office

The Carers Trust  has a comprehensive site providing information, advice and support services to carers. Check out their website at www.carers.org or telephone 0844 800 4361

Carer’s Allowance Unit. Provides information regarding Carer’s Allowance, the main state benefit for carers, including eligibility and how to make a claim. You can find it at Carers Allowance Unit or telephone 0177 289 9489

Vitalise. Provides holidays and respite care for people with severe disabilities with or without carers at five purpose built centres in the UK. Also offers special Alzheimer’s holidays for people with Dementia and their carers, which are subsidised by the Alzheimer’s Society. Check out their website at www.vitalise.org.uk or telephone 0845 345 1970

New Alzheimers Study Uncovers Shocking Statistics

Are you scared about going into a care home because you have dementia? I know I am and a recent survey undertaken by the Alzheimer’s Society found that 70% of us would be.

They also found that 80% of people living in care homes either have dementia or severe memory problems, which is significantly higher than had previously been estimated.

Worryingly the survey also found low expectations and a great deal of pessimism about life in care homes and highlighted a severe ‘image crisis’ in the care sector which they believe is leading to a failure to drive up standards of care.91 years of life

My own experience, both personal (my mother lives in a care home for people with dementia) and professional (over 30 years social and NHS experience, working with older people) supports these findings.

Low staff morale contributes to ‘low image’ of care homes

In this country we value working with money – high salaries and excessive bonuses – more highly than working in the care sector, where care staff earn little more than the minimum wage. Add to this the fact that Local Authorities have driven care fees so low there generally aren’t enough staff to do a good job and it isn’t surprising morale is at an all time low and people aren’t rushing to do this much needed work.

Caring for people with dementia is complex and demands greater skill than looking after older people who may be physically frail but remain mentally alert, yet this expertise is not acknowledged or reflected in higher pay.

My mother’s care home – a model of doing it right

When I visit my mother, I am always impressed by the endless patience, kindness and skill staff show residents. My mother’s home takes people at local authority rates (under £500 a week) yet it didn’t stop them taking residents out for an expensive meal at Christmas.  In addition, the manager had WiFi installed throughout the home when Mum got her iPad and recently allowed an elderly lady’s little dog to come in with her. However I know this care home is the exception rather than the rule and unrelated to the level of care fees paid. High care fees certainly do not guarantee quality and there are as many bad homes at the top of the care fees scale as there are good ones.

My rule of thumb

In my work as an independent specialist in care management for older people I regularly visit care homes for older people with dementia. Regrettably very few of them are as good as my mother’s and therefore fail the test I use for my clients:

‘Would this home be good enough for me or someone I love?’

With the number of people with dementia rising exponentially alongside increasing expectations, things will have to change. We demand the best for our children and ourselves throughout our lives so why should we settle for anything less for our own parents?

They will however be the last generation who put up with being treated badly. The Baby Boomers have now reached pensionable age and we will demand nothing less than being treated with respect, dignity and compassion. Until that time though, people with dementia will continue to be scared of going into a care home and expectations about care standards will remain low.

How to find a good care home for people with dementia

You will find my post Ten Questions to Ask When Choosing a Care Home  helpful.

A Personal Story of Dementia Care at Home

Hardly a day goes by without hearing about the ‘dementia tsunami’ about to engulf one in three of us over the age of 65, and how the number of people suffering from dementia is projected to double over the next 40 years.

Well I don’t know about you, but I don’t want residential care to be the only option if I am one of these statistics. I, like most people, want to remain in my own home and I am passionate in my pursuit of good person centred dementia care for my clients.

As you may be aware, I managed my mother’s dementia care at home for several years until it became untenable for her to remain at home because of my father’s deteriorating health. One of my associates actually provided dementia care at home for her mother. She told me how she felt the care system let her mother down as her Alzheimer’s advanced and she became more difficult to manage. Eventually she ended up moving her mother in to live with her and her husband.

Sally was still working as a Social Worker at the time but the methods she used to recruit a carer for her mother flew in the face of conventional  practice. She started by advertising for someone to look after her mother in a local shop.

A woman knocked on the door one day. She was a single mum with a small child and had no experience of dementia care. However as they sat talking, her mother put out her hand to the woman who responded by holding it gently while carrying on talking. This seemingly small act was enough for Sally to be confident that her mother liked the woman and she gave Ann the job, without taking up a reference or CRB check.

Sally explained the things that were important to her mother and how she enjoyed having her hands massaged with her favourite scented oils and sitting quietly listening to music. She began working alongside Ann and quickly found she was a able to give her mother the compassionate person centred care she and her husband were providing.

Ann with her gentle, respectful manner soon became an important part of her mother’s world and when her child minder let her down, Sally said she could bring her daughter with her, so long as her mother showed no objection. On the contrary, her mother showed by her reaction and body language that she enjoyed the little girl’s company and the child would colour pictures, read stories to her and do things that made her mother smile.

My purpose for telling you this story is to highlight how a person with dementia can still make choices, however advanced their dementia is, if you keep an open mind and observe them carefully. Also how simple pleasures like having a hand massage and being read to by a child can warm their heart.

My mother would not have appreciated having a carer who sometimes brought her daughter with her, not because she doesn’t like children, she just feels more comfortable with animals and adult company. This highlights how everyone’s dementia journey will be individual and personal to them. In all my years of working with older people, I never met two people with dementia that affected them in the same way.

Dementia is one of the greatest challenges you and your loved one  will ever face and every person’s dementia journey will be individual and personal to them . However, I can honestly say from personal experience that with compassionate person centred care, their life can be enhanced with dementia care at home and we can learn simple, invaluable lessons along the way such as  watching for clues and doing things the person enjoys. Just make sure you look after yourself  and find  support for yourself too. The Alzheimer’s Society is a good place to start. Good luck and let me know how you are getting on.