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The Impact on the Carer of Living with a Relative with Dementia Dr Jane White, GP, Gilbert Road Medical Group, Aberdeen Introduction 2013 Carers’ thoughts and feelings At Diagnosis Background As part of the GP Dementia Scholarship, I observed a representative from Alzheimer’s Scotland interviewing the wife of a dementia sufferer and I was particularly taken by the huge impact the diagnosis of dementia had on this lady and the restrictions placed on her due to her husband’s deteriorating condition. She also alluded to the fact that she had a very supportive GP, but often spouses feel marginalised and misunderstood with little support themselves. In view of this I was keen to look at what dementia means to those closest to the patient, particularly with regards to current concerns or restrictions in their lives, and also look at their fears for the future. “It reinforced my own diagnosis” FEELINGS of CARERS Worrie d/anxio us gry An d ve ie Aim el R As a Practice we did not have any way of identifying the spouses of our dementia sufferers. As we are a large practice, couples often attend different GPs for regular appointments so it would be easy for a GP not to know that their patient has a spouse with dementia, unless the patient brought in up in the consultation. It was felt that this information may be useful in managing the patient, particularly with regards to treatment, hospital admissions or referrals for investigations as it may influence their own willingness to accept care for themselves. Gilbert Road Medical Group has almost 12 000 patients, and 78 of these have a formal diagnosis of Dementia. I reviewed all these records and for the dementia patients who live with someone (spouse, partner, and family member), I have coded all these family members as “Carer – Living with patient with dementia”. I have recorded this information both as a reminder on the records (“yellow sticky” on Vision) and as a priority 1 diagnosis so it is immediately available information both in the surgery, but also if the carer needs a house visit. Methods I was particularly keen to discover what life was like living with a dementia sufferer, so I designed a questionnaire to be sent out to the 24 patients who lived with a relative. This questionnaire was sent to the dementia patient, to ensure consent (if he or she was able to give this) but was to be completed by the family member and returned to me anonymously at the surgery. These letters were sent out with a return date two weeks later, and then the results were analysed by myself. Questionnaire • Diagnosis of Dementia - how, when, by whom • Services involved – GP, consultant, CPN, DNs, Carers, OT, Care Manager • Alzheimer’s Scotland services – “Seize the day”, Football or Musical Memories, Dementia Adviser, 24 hour dementia helpline • Use of respite care • Carer’s thoughts and feelings • At diagnosis • Currently • About the future Results “Very worried about him. ” pe c te d it Hopeless and sa d “Sad and worried about what the future would hold. The Present Carers were asked two questions: • How does caring for a relative with dementia affect your daily life? • What restrictions does it place on your own activities or interests? “Tiring, stressful, never switch off” “It more or less takes over” “It causes arguments due to the fact he does not realise there is anything wrong with his memory. ” “We miss our car as it had to go. ” “I am unable to be out of the house too long” “I take him with me to line dancing and he sits and enjoys the music. ” The Future “Take each day as it comes” “I worry about him going into a home. ” Diagnosis Ex “It’s a grim outlook. ” “Fear that at some point he may not recognise me or our family. ” “Things will only get worse. ” “What would happen if I am ill? ” 24 questionnaires were sent out and 14 returned: 13 completed by spouses, and one by a daughter. Hence this project is only a small glimpse of what living with a patient with dementia is like. The diagnosis was made between the years 2002 and 2012. 12 patients had been diagnosed by scan, and only 2 directly by their GP. Services Involved Services currently involved Number of patients using service GP 11 Consultant 5 CPN 7 District nurses 0 Carers 4 Occupational Therapist 2 Support workers 3 Care Manager 4 Alzheimer’s Scotland Very few patients used the excellent services offered by Alzheimer’s Scotland • 4 patients had attended “Seize the Day” • 2 patients had been to Musical Memories • 2 patients had been to Football Memories • 6 had used Dementia Advisors • Only 1 had used the Dementia helpline Respite Care Only used by 2 patients but both were very positive about the benefit it had been for both the patient and the relative. Conclusion The questionnaire, although only returned by a handful of relatives, gave a very helpful insight into life living with a dementia patient. It is interesting to note that the most common service providing care for the dementia patient is still the GP, although not for all patients. CPN involvement only continues in half of these patients, and consultant input in just over one third. The GP therefore has a very significant role in supporting the carer too, and must not assume that the specialist services remain involved. It seems from the results given here that the services from Alzheimer’s Scotland are underutilised although half the family members have had contact with the Dementia Advisor. These services, such as Musical memories, Football Memories and “Seize the day” may be of benefit to more patients, and as a Practice we need to more actively promote Alzheimer’s Scotland. Of most interest in this project were thoughts and feelings expressed by the family members. Often the initial diagnosis is not a surprise to the family member, but there is a lot of fear and worry expressed over the future and what lies ahead. I do not think that I had fully appreciated the extent to which living with a patient with dementia affects the day to day life of the carer, and how much time it takes, as well as the restrictions and stress that is placed on them. Very few family members were able to carry on with their normal activities and it was much harder even to leave the house, without arranging care for the dementia sufferer. The family members also worried about the future and the fact that they may not be able to care for the dementia sufferer due to their own health deteriorating or the dementia progressing. Many wanted to avoid admission to a “care home”. They were also fearful about the patient not recognising them, becoming aggressive or wandering off. This project has highlighted the difficult role that relatives often play living with dementia patients, and how isolated anxious they can be. Family members often have huge fears about the future, and feel unsupported and are not able to carry on with their normal activities as they are busy looking after their loved ones with dementia. GPs and Psychiatric teams have vital roles to support these family members as well as the sufferers of dementia.