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Adding to our series of articles on services available for people living with dementia and their families, Caregiver-in-Chief, Barbara Stephens writes about the local organisations that support family carers.

In most areas of the country, there is a local carers service, providing advice, support and information for unpaid family carers (sometimes known as ’informal carers’). These organisations are usually independent charities, funded in part by the Local Authority (LA) and NHS Clinical Commissioning Group (CCG). Some carers services are affiliated to a national charity, such as Carers UK and Carers Trust

The help that is available from a local carers service might include: money advice and information on benefits, support groups, holistic therapies, counselling, respite care, signposting to other sources of support locally, vouchers for discounts on products and tickets to leisure facilities and arts events. Services offered will vary from area to area, depending on funding and local priorities and needs.

Generally, carers services operate open referral systems, encouraging people who are caring for a family member (with any condition) to make contact at the earliest opportunity.

Immediately following a person’s diagnosis of dementia, the primary family carer – spouse, partner, daughter, son, sibling, niece, nephew – may not identify themselves as a ‘carer’. It is an unfamiliar term, at odds with the existing family relationship, which is based on reciprocity. Being a ‘carer’ changes the dynamic and families need to adjust to this change over time, re-defining the terms of the relationship as the impact of dementia is felt.

It is understandable that families frequently decline the involvement of services in the early days. No one likes to feel that they cannot cope, and many carers resolutely carry on managing alone, resisting offers of help, and certainly not recognising that they themselves may need support for their own physical or mental health.

Elizabeth Martin, manager of Carers IW, frequently encounters families in crisis situations: “Families can fall into crisis before accepting help. This can be very sad as, often, the result is placement of the person with dementia in a residential care home; if the carer was given/had accepted support at an earlier stage, there could have been a very different outcome. I think this happens for a multitude of reasons, for example financial pressures, lack of preventative work by adult social care, and the very understandable perspective of I am his wife/husband it’s my job to do this”

Jayne Roberts, whose husband, Chris, lives with Alzheimer’s, reflects: “We went into the [diagnosis] appointment as husband and wife, we came out as patient and carer. But we are not prepared to accept that: Chris is my husband, I am his wife. Sometimes he is my carer, sometimes I care for him. It is a mutual arrangement, a partnership’.

It is important for carers services to be person-centred and respectful of the carer’s perspective. Families will want to hold on to what is ‘normal’ for them, their own family traditions and everyday routines. Adapting to an ever-changing landscape and coping with new and unpredictable challenges, can strain relationships and cause conflict within families. Interventions must balance the needs of the person living with dementia with those of the carer. Providing help for the carer, meeting his/her needs, will most often improve outcomes for the person with dementia; but sometimes their needs are at odds. Addressing these issues requires skill and sensitivity.

For carers to have access to support at times of transition, when significant decisions need to be made, is crucial.

Elizabeth illustrates this point with a real-life story:

“I work with a carer who is in her 80s and caring for her husband who has dementia. She was struggling to cope, and their recent holiday had upset her husband and disorientated him, and this had led to various issues, including bouts of incontinence and time confusion.

We supported her to speak to her immediate family as she felt they should be part of the decision making. We helped the family look at various options and they decided that they would move in to the family home to look after their father for a few days in every six weeks, enabling their mum to visit another family member and have a break. Every time she has this respite, she sends me a text telling me that she is laid on a sofa reading a book and feeling relaxed. This gives me a real sense of achievement, this is why we are here. It is not a quick fix, it took 3 years for his carer to realise that she could have a break, and that it was OK for her family to help out. I am hoping that she will also attend our residential respite weekend for carers this year”.

Carers IW encourages people to get in touch immediately after diagnosis.

“Carers IW are trying to persuade unpaid carers to get in touch early and to think about planning for the future. We are working closely with Adult Social Care to explore how we can work together to invest in carers lives at an earlier stage, rather than ‘scooping up’ after a crisis, which is always going to be unsatisfactory” says Elizabeth.

However, everyone is different: seeking help early and gathering lots of information is the way some people confront challenging situations in their lives, whilst others prefer to ‘carry on as normal’, learning new information when they need to.

Either way, carers services are there to help.

“Carers, and staff members too, will sometimes say, What can you do to help? It is what it is. We have to remind ourselves that listening is incredibly helpful; when we are caught up in a situation, we sometimes cannot see the wood for the trees”.

Services offered by Carers IW include:

Living Well Carers Lounge based at St Mary’s Hospital, Newport

The Lounge provides carers with a private space in the hospital setting, a chance to take some time out, have a hot drink or light refreshment, get a carers card that offers reduced priced meals, free parking, as well as the opportunity to talk with a support worker.

A team of 3 workers is available to support families with the transfer of care of people with dementia between hospital and home, enabling carers to understand the process, express preferences, exercise choice and participate in discharge planning.

“Thank you for all your kindness and help – it has helped myself and my husband to face the future knowing we have such wonderful support. Excellent service.”

Residential Respite Weekends

These residential respite weekends are held each year, offering time out for carers in a lovely building in the west of the Island that looks out to the sea. All the team contribute, making cakes, offering lifts, helping with activities. The intention is to offer carers home cooked meals, a glass of wine or two, a nice dessert, creative & fun workshops, holistic therapies, relaxation sessions, walks and, most importantly, time to relax with no pressures.

“I live from weekend to weekend, it means so much to me, I love the fact that I can do what I want, join in or not, know that for once that I count, and someone cares for me.”

Living Well GP Link Worker

The role of the GP Link Worker is to raise the profile of carers and awareness of patient/carer issues with GP practices across the Island, to support improved outcomes for carers and patients.

Ring Round Service

The Ring Round (RR) service is manned by trained volunteers who offer carers a weekly call so to monitor families who may not need immediate help, but whose situation may change in the future.

Contact your Local Authority to find out what services are available in your area for carers. You can also search on the websites of Carers UK and Carers Trust. Alzheimer’s Society and Age UK offer services for family carers in some areas, and Admiral Nurses provide specialist help for family carers, via the Dementia UK Admiral Nurses helpline and face-to-face in community, hospital, hospice and care home settings.

If you have positive experiences of local carers services to share, please do get in touch barbara@liftedcare.com