Our problem this week comes from Rick, and the situation he's facing is a common one. The time has come for his elderly Dad to go into some kind of aged care - but Dad doesn't want to leave home.

Rick's father is mostly in pretty good health for his age - in his 80s - but it's his mind that's not in the best shape. He's in the early stages of dementia. His wife recently passed away and since then he just hasn't been looking after himself properly. He lives in a country town and it's difficult for his children to be there for him, as they all live interstate. So they're really concerned about his welfare.

They want him to go into a retirement or nursing home where he'll be safe and looked after. But Dad loves his home and doesn't want to move. Which is pretty understandable - he's lived there happily for 40 years and it holds all his family memories.

What can Rick do?

DISCUSSION POINTS

• When you know your parent isn't going to be ok on their own, but they don't understand that - perhaps because of memory loss or the early stages of dementia - how do you even begin to discuss it with them?

• How do you tell mum or dad that they have to leave all they have known for decades, the home that is familiar, comfortable, and filled with memories - - and start again in an unfamiliar place?

• Do you need to be firm, or are there gentler ways to encourage them to explore the options?

• What are the options - particularly for a person who is not just a little bit slow on their feet, but is developing dementia?

• If you've been through this experience, tell us your story - How did you make it easier for your mum or dad? What worked for you?

• How can you make your parents' transition to aged care, less painful or traumatic?

EXPERT'S POINTERS -

Our expert advice this week came from Pauline Armour, Community Care Development Manager for Uniting Care Ageing, NSW-ACT.

This can be a worrying time, especially if you live some distance from your parent, need to coordinate with brothers and sisters who do not live close, and have other family and work responsibilities to juggle.  Family members need to obtain information on the health, assessment and support services available, and the options that will match their parent's needs so they can assist their parent with making decisions that will give the best outcomes. This can be a difficult process at times, especially due to waiting times for assessments and service availability, so it is best to start early to make contact and learn what services can offer support.

Starting points on this journey are:
• Commonwealth Respite and Carelink Centre  for information on local services 1800 052 222  including the Aged Care Assessment Team (ACAT), food services, social support, package of care at home, aged care residential services
• The GP is the primary health care professional who is the first contact for referral to specialist health services. After discussion, with the consent of the father, talk with the GP about over 70yrs health assessments, general health - including mental health (depression is an issue to monitor especially in older men over 80 who are living alone), referral to a geriatrician for assessment,  diagnosis and treatment for the dementia
• Alzheimer's Australia has a helpline for information on dementia, advice, and counselling for the son : National Dementia Helpline - 1800 100 500
• Carer Resource Centres for information on services and entitlements 1800 242 636

Approaches that are effective:
• Talk with your Dad, ask how he is , what is his day like, what is he expressing concern about and what does he enjoy doing, who does he trust and listen to for advice. Tell him you love him, share stories of your daily life, try to initiate a discussion on how he is grieving for his wife -what he misses most, what are the difficult times of the day, what he has been doing to cope with this. Tell him you are there for him, affirm his importance to you and share some positive memories from the past -remember the time when we .....( had a holiday, picnic...)
• Engage with a trusted person and his Dad - eg, Minister, friend
• A family meeting at home with Dad during the holidays to see what everyone can offer to the conversation and start planning together
• Seek advice from a counsellor

Strategies that help an older person in this time:

• Their friends and family listening to the elderly person to understand their experience, their feelings and concerns
• Family members who are supportive and 'journey together' -not making decisions and telling him the result-but exploring the options and support services that can assist, explaining to him what is happening and the process involved.
• Work together with the key people he relies on and trusts in his social network and local community -GP, a friend,  a close neighbour, his Minister
• Utilise the health and aged care services effectively -have a consultation with a geriatrician for an assessment, find out more about dementia and the type of dementia he has been diagnosed with, visit aged care services to see what is available -make a list and ask questions
• Plan for future needs and make contingency plans -don't leave it until there is a crisis admission to hospital as there are then limited options with tight timeframes.
 
Insight into how the older person might be feeling:

The Dad is probably grieving over the death of his wife, anxious, worried and confused with his memory loss and fearful of loss of control of his life and others taking over and making decisions about what he should do. He could be clinically depressed and if so this needs to be addressed quickly with mental health professional support.
His coping strategies that he has used to survive and adapt to life's challenges so far in his life may not be working for him in this situation as he is coping with health deterioration and frailty, and living alone, that are new for him. The issue of loss of a feeling of identity with dementia can be very frightening.

This is a journey and can be a time that strengthens your relationship and brings you closer to your Mum or Dad and you can meet some wonderful people along the way. There can be positives as well as challenges and sadness.

Firstly, prepare -find out what  type of dementia they have and what their current cognitive capacity is, from the geriatrician's assessment, read about the type of dementia they have, talk to other people who have dementia and their families and seek advice from expert professional staff. There are a lot of great resources available from Alzheimers Aust., NSW  on their website, through the National Dementia Helpline,  and courses, like Mind your Mind and The Living with Memory Loss Program, that have assisted many families in this situation.
Then using this information and advice, guide and assist your parent through the steps of assessment, referral, choosing an aged care residential service that will provide the lifestyle and support they need and require. Be honest, be calm, be patient, be realistic in your expectations of their capacity to understand and engage, accept the support of others-you are not on your own with this. Expect repetition in discussions and develop coping strategies for yourself to address your frustrations and your own sadness.

Gently explore the issues, stay calm and reminisce together, share your feelings, be positive and affirming of their life's achievements, sort out valued possessions, significant mementos to take with them -photo albums, work with them at their pace -give time to the process of saying goodbye to their home, help to link them into their new home by fostering introductions, exploring together, asking staff, residents and their family visitors, and  volunteers there, about the 'way things are done' there and who to ask for advice and assistance on different issues, read all the literature provided on the service arrangements, eg, for laundry, bus trips, meal arrangements, social activities. Talk with the care team about your parent care needs and how these will be supported -daily routines for care, medical support .

You need to understand their decision making capacity and always work within that -explain, listen, always be respectful and try to identify the underlying concerns the person with dementia is expressing, eg, fear of the unknown, loss of links with lifelong friends -and address these.

Make it easier by being informed on services, how the system works, learning to be an advocate without becoming adversarial,  planning ahead, doing tings that reduce anxiety and agitation (cup of tea, walk), addressing your own emotional and support needs, being patient and take time to listen.

• Become informed on Dementia and its impact, and what support is available from the health and aged care service system
• Stay focused on obtaining the best quality of life for your Mum or Dad
• Look after yourself and accept support and advice
• Communicate and share the journey with trusted friends and family members and other people facing similar issues through Carer support networks, and Alzheimers Aust.
• Plan ahead for the next step with your parent including health and medical, care and support, psychological and emotional, social, financial, housing/accommodation and substitute decision making arrangements.